scdaa’s hrsa-funded newborn screening grant …€™s hrsa-funded newborn screening grant update...
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SCDAArsquos HRSA-funded Newborn Screening Grant Update
Kim Smith-Whitley MDChief Medical Officer
Sickle Cell Disease Association of America Inc
Introduction
bull Sickle cell disease is an inherited hemoglobinopathycharacterized by hemolysis and vascular occlusion
bull Recent research has led to advances in clinical care improved the understanding of the underlying pathophysiology of sickle cell disease yet morbidity and mortality remain high
Introduction
bull Continued high morbidity and mortality
bull Few disease-modifying therapies
bull No treatments to alter the course of acute painchronic pain
bull No ldquouniversalrdquo cure
bull Poor access to high quality care
ndash Need to improve existing treatment regimens
Sickle Cell DiseaseThe Challenge
bull High cost medical care
bull New health policy development impacting sickle cell population without advocacy due to lack of data
bull Few medical professions with expertise in sickle cell disease
bull Relatively high rate of deaths in young adult age group and continued decreased survival overall
Sickle Cell DiseaseThe Challenge
SCDAArsquos Mission
bull ldquoto advocate for and enhance our membershiprsquos ability to improve the quality of health life and services for individuals families and communities affected by sickle cell disease and related conditions while promoting the search for a cure for all people in the world with sickle cell diseaserdquo
Clinical Care and Research Agenda
bull Increase access to high quality clinical carebull Improve disease-specific treatments and preventive therapiesbull Facilitate development of therapeutic innovationsbull Improve existing long-term therapies and curesbull Improve patient education on the clinical research processbull Increase patient involvement in clinical research process at every
stage including advocating for specific areas of research focus clinical trial design and development of patient reported outcomes initiatives to get meaningful research results to patients in a more timely manner
bull Improve health care decision-making tools and resourcesbull Develop and disseminate best practices in clinical carebull Develop resources for and Increase health care manpower with
knowledge and expertise in sickle cell disease
Sickle Cell Disease A Common AgendaTo Support a New Infrastructure
Increased Access to High Quality Health Care Across the Lifespan
Drug Development and Therapies that Improve Qualityof Life and Decrease Disease-related Complications
Low-risk Profile Cures Accessible for All People with Sickle Cell Disease
Challenges
Access to high quality care
bull Transitions of care
bull Access to information ndash disease self-management therapies advocacy and awareness
bull Patient concernsinterests - therapeutic approaches that may not focus on quality of life
bull Isolationsilos ndash children and adults with SCD families caregivers health care and research teams
Sickle Cell Disease A Common AgendaTo Support a New Infrastructure
Better informed children and adults with SCD by providing access to information resources and support
Better informed providers by providing access to SCD resources and sickle cell expertise
Improved efficiency on sickle cell initiatives by providinga common pathway for communication between sicklecell community stakeholders
Get Connected Initiative Purpose
bull Establish a network of children adults and families living with sickle cell disease and sickle cell trait SCDAA member organizations health care providers and other community-based organizations to distribute information related to clinical care research health services health policy and advocacy
bull Establish a registry for children and adults living with sickle cell for storage of medical information related to diagnosis (SCDSCT) and treatment
bull Developing on-line communities for information sharing and ldquopsychosocialrdquo support
Get Connected Initiative Purpose
bull Establish a network of providers educated about the unique health care and psychosocial needs of children and adults living with sickle cell disease
bull Connect children and adults with sickle cell disease to high quality resources for information on health care including behavioral health clinical research and ancillary health care resources
bull Establish a network to support clinical research through community-based research navigators
What is ldquoGet Connectedrdquo
Information sharing network and patient-powered registry
ndash provides high quality information about clinical care self care research and health advocacy issues related to sickle cell disease and sickle cell trait
ndash provides the storage of health information that enables patients to better navigate the health care system
ndash provides resources to access to disease-specific care and
ndash provides a common portal and a platform for research initiatives generated by the needs of our patient population
HRSA SICKLE CELL DISEASE NEWBORN SCREENING PROGRAM
Funding Opportunity Announcement HRSA-11-031
Awarded June 2015
Two-year project
Grant Goals
bull Create a national effort to develop implement and maintain a strategy to identify and assess the care quality and outcomes of individuals with sickle cell disease in order to improve access to comprehensive care
bull Increase the use of sickle cell educatorcounselors (eg community health workers) and
bull Increase the number of patients with care coordination follow-up and referral to medical homes for sickle cell patients
Grant Activities
bull Focus on selecting CBOs that are servicing the sickle cell community
bull Identify educate and train CHWs to locate children and adults with SCD
bull Connect children and adults to services if not connected
bull Enroll children and adults in Get Connected as a measurement of services provided and as a means to connect for future service provision
Grant Activities
bull Educate CHWs about hydroxyurea
bull Educate children and adults with SCD about hydroxyurea through CHWs directing consumers to CBO EducatorsCounselors and Medical Homes
bull Measure hydroxyurea awareness in Get Connected
bull 26 sites
bull 20 states
bull 5 HRSA regions
Development of GC IT Infrastructure
bull Global Visions Technologybull SCDAA
bull Development of patient enrollment formsndash Development of patient profiles
bull Development of system to aggregate data to insure de-identification
bull Focused on using established terminology and nomenclature ndash PhenX (consensus measures for phenotypes and exposures) AHRQ raceethnicity
The GC User Interface
bull Enrollment
bull Profile design and completion
bull Use ldquoprofilesrdquo to gather information to assess needs and shape future initiatives
User Name
Password
Log In
Forgot Password
copy 2014 Global Vision Technologies IncContact Global Vision Technologies Inc if you have problems or questions
Privacy Policy | Terms and Conditions
Join the Program
Welcome to the ldquoGet Connectedrdquo
Registry
Role of Community Health Workers
1 Find Patients
2 Enroll in Get
Connected
3 Educate
4 Make Referrals to
EducatorCounselors for CC
Early Results
36 Community Health Workers trained
3152 children and adults with sickle cell disease enrolled
What about all of these other registries
bull Collaborate donrsquot duplicate
bull Complement
bull Broaden stakeholder base
bull Launch new initiatives
Include common stakeholders
Use common data elements terminology definitions
Acknowledgements
bull HRSA ndash Dr Donnell Ivy Andrea Williamsbull National Institute for Healthcare Quality ndash Drs Suzette
Oyeku and Scott Bernsbull American College of Medical Genetics ndash Dr Amy
Browerbull National SCDAA HRSA Project
ndash Sonja L Banksndash Jennifer Fieldsndash Sonya Rossndash Ashley Costonndash Meghan Ringgoldndash Leroy Hughes Jr
NORTHEAST REGION - Regions 2 amp 3
Pennsylvania SCDAA - Philadelphia Delaware Chapter
Childrens Sickle Cell Foundation
South Central PA Sickle Cell Council
New Jersey Sickle Cell Association of New Jersey
Delaware Tova Community Health Inc
New York The Sickle Cell Thalasemia Patient Network
Queens Sickle Cell Associaton
Maryland Maryland Sickle Cell Disease Association Inc
Virginia Sickle Cell Association Inc
Virgin Islands Virgin Islands
SOUTHEAST REGION - Region 4
Alabama Central Alabama Chapter of the Sickle Cell Foundation
Sickle Cell Foundation of Greater Montgomery
Georgia Sickle Cell Foundation of Georgia
North Carolina Piedmont Health Service and Sickle Cell Agency
Community Health Interventions amp Sickle Cell
South Carolina James R Clark Memorial Sickle Cell Foundation
Tennesse The Sickle Cell Foundation of Tennessee
Association of Sickle Cell Lower Chattahoochie Regional Support Group
MIDWEST REGION - Region 5
Illinois Sickle Cell Disease Association of Illinois
Indiana Martin Center Sickle Cell Initiative
Michigan Sickle Cell Disease Association of America MI
Ohio Ohio Sickle Cell and Health Association Inc
HEARTLAND REGION - Region 7
Missouri St Louis Sickle Cell Association
PACIFIC NORTWEST RGION - Regions 9 and 10
California Childrens Sickle Cell Foundation
Cayenne Wellness
Nevada Childrens Specialty of Nevada
Oregon Sickle Cell Anemia Foundation of Oregon
Stay Informed
Get Connected
Embrace a Sickle Cell CUhRE (Community Uniting Health and Research Environments)
Working towards healthier lives for children and
adults with sickle cell
Introduction
bull Sickle cell disease is an inherited hemoglobinopathycharacterized by hemolysis and vascular occlusion
bull Recent research has led to advances in clinical care improved the understanding of the underlying pathophysiology of sickle cell disease yet morbidity and mortality remain high
Introduction
bull Continued high morbidity and mortality
bull Few disease-modifying therapies
bull No treatments to alter the course of acute painchronic pain
bull No ldquouniversalrdquo cure
bull Poor access to high quality care
ndash Need to improve existing treatment regimens
Sickle Cell DiseaseThe Challenge
bull High cost medical care
bull New health policy development impacting sickle cell population without advocacy due to lack of data
bull Few medical professions with expertise in sickle cell disease
bull Relatively high rate of deaths in young adult age group and continued decreased survival overall
Sickle Cell DiseaseThe Challenge
SCDAArsquos Mission
bull ldquoto advocate for and enhance our membershiprsquos ability to improve the quality of health life and services for individuals families and communities affected by sickle cell disease and related conditions while promoting the search for a cure for all people in the world with sickle cell diseaserdquo
Clinical Care and Research Agenda
bull Increase access to high quality clinical carebull Improve disease-specific treatments and preventive therapiesbull Facilitate development of therapeutic innovationsbull Improve existing long-term therapies and curesbull Improve patient education on the clinical research processbull Increase patient involvement in clinical research process at every
stage including advocating for specific areas of research focus clinical trial design and development of patient reported outcomes initiatives to get meaningful research results to patients in a more timely manner
bull Improve health care decision-making tools and resourcesbull Develop and disseminate best practices in clinical carebull Develop resources for and Increase health care manpower with
knowledge and expertise in sickle cell disease
Sickle Cell Disease A Common AgendaTo Support a New Infrastructure
Increased Access to High Quality Health Care Across the Lifespan
Drug Development and Therapies that Improve Qualityof Life and Decrease Disease-related Complications
Low-risk Profile Cures Accessible for All People with Sickle Cell Disease
Challenges
Access to high quality care
bull Transitions of care
bull Access to information ndash disease self-management therapies advocacy and awareness
bull Patient concernsinterests - therapeutic approaches that may not focus on quality of life
bull Isolationsilos ndash children and adults with SCD families caregivers health care and research teams
Sickle Cell Disease A Common AgendaTo Support a New Infrastructure
Better informed children and adults with SCD by providing access to information resources and support
Better informed providers by providing access to SCD resources and sickle cell expertise
Improved efficiency on sickle cell initiatives by providinga common pathway for communication between sicklecell community stakeholders
Get Connected Initiative Purpose
bull Establish a network of children adults and families living with sickle cell disease and sickle cell trait SCDAA member organizations health care providers and other community-based organizations to distribute information related to clinical care research health services health policy and advocacy
bull Establish a registry for children and adults living with sickle cell for storage of medical information related to diagnosis (SCDSCT) and treatment
bull Developing on-line communities for information sharing and ldquopsychosocialrdquo support
Get Connected Initiative Purpose
bull Establish a network of providers educated about the unique health care and psychosocial needs of children and adults living with sickle cell disease
bull Connect children and adults with sickle cell disease to high quality resources for information on health care including behavioral health clinical research and ancillary health care resources
bull Establish a network to support clinical research through community-based research navigators
What is ldquoGet Connectedrdquo
Information sharing network and patient-powered registry
ndash provides high quality information about clinical care self care research and health advocacy issues related to sickle cell disease and sickle cell trait
ndash provides the storage of health information that enables patients to better navigate the health care system
ndash provides resources to access to disease-specific care and
ndash provides a common portal and a platform for research initiatives generated by the needs of our patient population
HRSA SICKLE CELL DISEASE NEWBORN SCREENING PROGRAM
Funding Opportunity Announcement HRSA-11-031
Awarded June 2015
Two-year project
Grant Goals
bull Create a national effort to develop implement and maintain a strategy to identify and assess the care quality and outcomes of individuals with sickle cell disease in order to improve access to comprehensive care
bull Increase the use of sickle cell educatorcounselors (eg community health workers) and
bull Increase the number of patients with care coordination follow-up and referral to medical homes for sickle cell patients
Grant Activities
bull Focus on selecting CBOs that are servicing the sickle cell community
bull Identify educate and train CHWs to locate children and adults with SCD
bull Connect children and adults to services if not connected
bull Enroll children and adults in Get Connected as a measurement of services provided and as a means to connect for future service provision
Grant Activities
bull Educate CHWs about hydroxyurea
bull Educate children and adults with SCD about hydroxyurea through CHWs directing consumers to CBO EducatorsCounselors and Medical Homes
bull Measure hydroxyurea awareness in Get Connected
bull 26 sites
bull 20 states
bull 5 HRSA regions
Development of GC IT Infrastructure
bull Global Visions Technologybull SCDAA
bull Development of patient enrollment formsndash Development of patient profiles
bull Development of system to aggregate data to insure de-identification
bull Focused on using established terminology and nomenclature ndash PhenX (consensus measures for phenotypes and exposures) AHRQ raceethnicity
The GC User Interface
bull Enrollment
bull Profile design and completion
bull Use ldquoprofilesrdquo to gather information to assess needs and shape future initiatives
User Name
Password
Log In
Forgot Password
copy 2014 Global Vision Technologies IncContact Global Vision Technologies Inc if you have problems or questions
Privacy Policy | Terms and Conditions
Join the Program
Welcome to the ldquoGet Connectedrdquo
Registry
Role of Community Health Workers
1 Find Patients
2 Enroll in Get
Connected
3 Educate
4 Make Referrals to
EducatorCounselors for CC
Early Results
36 Community Health Workers trained
3152 children and adults with sickle cell disease enrolled
What about all of these other registries
bull Collaborate donrsquot duplicate
bull Complement
bull Broaden stakeholder base
bull Launch new initiatives
Include common stakeholders
Use common data elements terminology definitions
Acknowledgements
bull HRSA ndash Dr Donnell Ivy Andrea Williamsbull National Institute for Healthcare Quality ndash Drs Suzette
Oyeku and Scott Bernsbull American College of Medical Genetics ndash Dr Amy
Browerbull National SCDAA HRSA Project
ndash Sonja L Banksndash Jennifer Fieldsndash Sonya Rossndash Ashley Costonndash Meghan Ringgoldndash Leroy Hughes Jr
NORTHEAST REGION - Regions 2 amp 3
Pennsylvania SCDAA - Philadelphia Delaware Chapter
Childrens Sickle Cell Foundation
South Central PA Sickle Cell Council
New Jersey Sickle Cell Association of New Jersey
Delaware Tova Community Health Inc
New York The Sickle Cell Thalasemia Patient Network
Queens Sickle Cell Associaton
Maryland Maryland Sickle Cell Disease Association Inc
Virginia Sickle Cell Association Inc
Virgin Islands Virgin Islands
SOUTHEAST REGION - Region 4
Alabama Central Alabama Chapter of the Sickle Cell Foundation
Sickle Cell Foundation of Greater Montgomery
Georgia Sickle Cell Foundation of Georgia
North Carolina Piedmont Health Service and Sickle Cell Agency
Community Health Interventions amp Sickle Cell
South Carolina James R Clark Memorial Sickle Cell Foundation
Tennesse The Sickle Cell Foundation of Tennessee
Association of Sickle Cell Lower Chattahoochie Regional Support Group
MIDWEST REGION - Region 5
Illinois Sickle Cell Disease Association of Illinois
Indiana Martin Center Sickle Cell Initiative
Michigan Sickle Cell Disease Association of America MI
Ohio Ohio Sickle Cell and Health Association Inc
HEARTLAND REGION - Region 7
Missouri St Louis Sickle Cell Association
PACIFIC NORTWEST RGION - Regions 9 and 10
California Childrens Sickle Cell Foundation
Cayenne Wellness
Nevada Childrens Specialty of Nevada
Oregon Sickle Cell Anemia Foundation of Oregon
Stay Informed
Get Connected
Embrace a Sickle Cell CUhRE (Community Uniting Health and Research Environments)
Working towards healthier lives for children and
adults with sickle cell
bull Continued high morbidity and mortality
bull Few disease-modifying therapies
bull No treatments to alter the course of acute painchronic pain
bull No ldquouniversalrdquo cure
bull Poor access to high quality care
ndash Need to improve existing treatment regimens
Sickle Cell DiseaseThe Challenge
bull High cost medical care
bull New health policy development impacting sickle cell population without advocacy due to lack of data
bull Few medical professions with expertise in sickle cell disease
bull Relatively high rate of deaths in young adult age group and continued decreased survival overall
Sickle Cell DiseaseThe Challenge
SCDAArsquos Mission
bull ldquoto advocate for and enhance our membershiprsquos ability to improve the quality of health life and services for individuals families and communities affected by sickle cell disease and related conditions while promoting the search for a cure for all people in the world with sickle cell diseaserdquo
Clinical Care and Research Agenda
bull Increase access to high quality clinical carebull Improve disease-specific treatments and preventive therapiesbull Facilitate development of therapeutic innovationsbull Improve existing long-term therapies and curesbull Improve patient education on the clinical research processbull Increase patient involvement in clinical research process at every
stage including advocating for specific areas of research focus clinical trial design and development of patient reported outcomes initiatives to get meaningful research results to patients in a more timely manner
bull Improve health care decision-making tools and resourcesbull Develop and disseminate best practices in clinical carebull Develop resources for and Increase health care manpower with
knowledge and expertise in sickle cell disease
Sickle Cell Disease A Common AgendaTo Support a New Infrastructure
Increased Access to High Quality Health Care Across the Lifespan
Drug Development and Therapies that Improve Qualityof Life and Decrease Disease-related Complications
Low-risk Profile Cures Accessible for All People with Sickle Cell Disease
Challenges
Access to high quality care
bull Transitions of care
bull Access to information ndash disease self-management therapies advocacy and awareness
bull Patient concernsinterests - therapeutic approaches that may not focus on quality of life
bull Isolationsilos ndash children and adults with SCD families caregivers health care and research teams
Sickle Cell Disease A Common AgendaTo Support a New Infrastructure
Better informed children and adults with SCD by providing access to information resources and support
Better informed providers by providing access to SCD resources and sickle cell expertise
Improved efficiency on sickle cell initiatives by providinga common pathway for communication between sicklecell community stakeholders
Get Connected Initiative Purpose
bull Establish a network of children adults and families living with sickle cell disease and sickle cell trait SCDAA member organizations health care providers and other community-based organizations to distribute information related to clinical care research health services health policy and advocacy
bull Establish a registry for children and adults living with sickle cell for storage of medical information related to diagnosis (SCDSCT) and treatment
bull Developing on-line communities for information sharing and ldquopsychosocialrdquo support
Get Connected Initiative Purpose
bull Establish a network of providers educated about the unique health care and psychosocial needs of children and adults living with sickle cell disease
bull Connect children and adults with sickle cell disease to high quality resources for information on health care including behavioral health clinical research and ancillary health care resources
bull Establish a network to support clinical research through community-based research navigators
What is ldquoGet Connectedrdquo
Information sharing network and patient-powered registry
ndash provides high quality information about clinical care self care research and health advocacy issues related to sickle cell disease and sickle cell trait
ndash provides the storage of health information that enables patients to better navigate the health care system
ndash provides resources to access to disease-specific care and
ndash provides a common portal and a platform for research initiatives generated by the needs of our patient population
HRSA SICKLE CELL DISEASE NEWBORN SCREENING PROGRAM
Funding Opportunity Announcement HRSA-11-031
Awarded June 2015
Two-year project
Grant Goals
bull Create a national effort to develop implement and maintain a strategy to identify and assess the care quality and outcomes of individuals with sickle cell disease in order to improve access to comprehensive care
bull Increase the use of sickle cell educatorcounselors (eg community health workers) and
bull Increase the number of patients with care coordination follow-up and referral to medical homes for sickle cell patients
Grant Activities
bull Focus on selecting CBOs that are servicing the sickle cell community
bull Identify educate and train CHWs to locate children and adults with SCD
bull Connect children and adults to services if not connected
bull Enroll children and adults in Get Connected as a measurement of services provided and as a means to connect for future service provision
Grant Activities
bull Educate CHWs about hydroxyurea
bull Educate children and adults with SCD about hydroxyurea through CHWs directing consumers to CBO EducatorsCounselors and Medical Homes
bull Measure hydroxyurea awareness in Get Connected
bull 26 sites
bull 20 states
bull 5 HRSA regions
Development of GC IT Infrastructure
bull Global Visions Technologybull SCDAA
bull Development of patient enrollment formsndash Development of patient profiles
bull Development of system to aggregate data to insure de-identification
bull Focused on using established terminology and nomenclature ndash PhenX (consensus measures for phenotypes and exposures) AHRQ raceethnicity
The GC User Interface
bull Enrollment
bull Profile design and completion
bull Use ldquoprofilesrdquo to gather information to assess needs and shape future initiatives
User Name
Password
Log In
Forgot Password
copy 2014 Global Vision Technologies IncContact Global Vision Technologies Inc if you have problems or questions
Privacy Policy | Terms and Conditions
Join the Program
Welcome to the ldquoGet Connectedrdquo
Registry
Role of Community Health Workers
1 Find Patients
2 Enroll in Get
Connected
3 Educate
4 Make Referrals to
EducatorCounselors for CC
Early Results
36 Community Health Workers trained
3152 children and adults with sickle cell disease enrolled
What about all of these other registries
bull Collaborate donrsquot duplicate
bull Complement
bull Broaden stakeholder base
bull Launch new initiatives
Include common stakeholders
Use common data elements terminology definitions
Acknowledgements
bull HRSA ndash Dr Donnell Ivy Andrea Williamsbull National Institute for Healthcare Quality ndash Drs Suzette
Oyeku and Scott Bernsbull American College of Medical Genetics ndash Dr Amy
Browerbull National SCDAA HRSA Project
ndash Sonja L Banksndash Jennifer Fieldsndash Sonya Rossndash Ashley Costonndash Meghan Ringgoldndash Leroy Hughes Jr
NORTHEAST REGION - Regions 2 amp 3
Pennsylvania SCDAA - Philadelphia Delaware Chapter
Childrens Sickle Cell Foundation
South Central PA Sickle Cell Council
New Jersey Sickle Cell Association of New Jersey
Delaware Tova Community Health Inc
New York The Sickle Cell Thalasemia Patient Network
Queens Sickle Cell Associaton
Maryland Maryland Sickle Cell Disease Association Inc
Virginia Sickle Cell Association Inc
Virgin Islands Virgin Islands
SOUTHEAST REGION - Region 4
Alabama Central Alabama Chapter of the Sickle Cell Foundation
Sickle Cell Foundation of Greater Montgomery
Georgia Sickle Cell Foundation of Georgia
North Carolina Piedmont Health Service and Sickle Cell Agency
Community Health Interventions amp Sickle Cell
South Carolina James R Clark Memorial Sickle Cell Foundation
Tennesse The Sickle Cell Foundation of Tennessee
Association of Sickle Cell Lower Chattahoochie Regional Support Group
MIDWEST REGION - Region 5
Illinois Sickle Cell Disease Association of Illinois
Indiana Martin Center Sickle Cell Initiative
Michigan Sickle Cell Disease Association of America MI
Ohio Ohio Sickle Cell and Health Association Inc
HEARTLAND REGION - Region 7
Missouri St Louis Sickle Cell Association
PACIFIC NORTWEST RGION - Regions 9 and 10
California Childrens Sickle Cell Foundation
Cayenne Wellness
Nevada Childrens Specialty of Nevada
Oregon Sickle Cell Anemia Foundation of Oregon
Stay Informed
Get Connected
Embrace a Sickle Cell CUhRE (Community Uniting Health and Research Environments)
Working towards healthier lives for children and
adults with sickle cell
bull High cost medical care
bull New health policy development impacting sickle cell population without advocacy due to lack of data
bull Few medical professions with expertise in sickle cell disease
bull Relatively high rate of deaths in young adult age group and continued decreased survival overall
Sickle Cell DiseaseThe Challenge
SCDAArsquos Mission
bull ldquoto advocate for and enhance our membershiprsquos ability to improve the quality of health life and services for individuals families and communities affected by sickle cell disease and related conditions while promoting the search for a cure for all people in the world with sickle cell diseaserdquo
Clinical Care and Research Agenda
bull Increase access to high quality clinical carebull Improve disease-specific treatments and preventive therapiesbull Facilitate development of therapeutic innovationsbull Improve existing long-term therapies and curesbull Improve patient education on the clinical research processbull Increase patient involvement in clinical research process at every
stage including advocating for specific areas of research focus clinical trial design and development of patient reported outcomes initiatives to get meaningful research results to patients in a more timely manner
bull Improve health care decision-making tools and resourcesbull Develop and disseminate best practices in clinical carebull Develop resources for and Increase health care manpower with
knowledge and expertise in sickle cell disease
Sickle Cell Disease A Common AgendaTo Support a New Infrastructure
Increased Access to High Quality Health Care Across the Lifespan
Drug Development and Therapies that Improve Qualityof Life and Decrease Disease-related Complications
Low-risk Profile Cures Accessible for All People with Sickle Cell Disease
Challenges
Access to high quality care
bull Transitions of care
bull Access to information ndash disease self-management therapies advocacy and awareness
bull Patient concernsinterests - therapeutic approaches that may not focus on quality of life
bull Isolationsilos ndash children and adults with SCD families caregivers health care and research teams
Sickle Cell Disease A Common AgendaTo Support a New Infrastructure
Better informed children and adults with SCD by providing access to information resources and support
Better informed providers by providing access to SCD resources and sickle cell expertise
Improved efficiency on sickle cell initiatives by providinga common pathway for communication between sicklecell community stakeholders
Get Connected Initiative Purpose
bull Establish a network of children adults and families living with sickle cell disease and sickle cell trait SCDAA member organizations health care providers and other community-based organizations to distribute information related to clinical care research health services health policy and advocacy
bull Establish a registry for children and adults living with sickle cell for storage of medical information related to diagnosis (SCDSCT) and treatment
bull Developing on-line communities for information sharing and ldquopsychosocialrdquo support
Get Connected Initiative Purpose
bull Establish a network of providers educated about the unique health care and psychosocial needs of children and adults living with sickle cell disease
bull Connect children and adults with sickle cell disease to high quality resources for information on health care including behavioral health clinical research and ancillary health care resources
bull Establish a network to support clinical research through community-based research navigators
What is ldquoGet Connectedrdquo
Information sharing network and patient-powered registry
ndash provides high quality information about clinical care self care research and health advocacy issues related to sickle cell disease and sickle cell trait
ndash provides the storage of health information that enables patients to better navigate the health care system
ndash provides resources to access to disease-specific care and
ndash provides a common portal and a platform for research initiatives generated by the needs of our patient population
HRSA SICKLE CELL DISEASE NEWBORN SCREENING PROGRAM
Funding Opportunity Announcement HRSA-11-031
Awarded June 2015
Two-year project
Grant Goals
bull Create a national effort to develop implement and maintain a strategy to identify and assess the care quality and outcomes of individuals with sickle cell disease in order to improve access to comprehensive care
bull Increase the use of sickle cell educatorcounselors (eg community health workers) and
bull Increase the number of patients with care coordination follow-up and referral to medical homes for sickle cell patients
Grant Activities
bull Focus on selecting CBOs that are servicing the sickle cell community
bull Identify educate and train CHWs to locate children and adults with SCD
bull Connect children and adults to services if not connected
bull Enroll children and adults in Get Connected as a measurement of services provided and as a means to connect for future service provision
Grant Activities
bull Educate CHWs about hydroxyurea
bull Educate children and adults with SCD about hydroxyurea through CHWs directing consumers to CBO EducatorsCounselors and Medical Homes
bull Measure hydroxyurea awareness in Get Connected
bull 26 sites
bull 20 states
bull 5 HRSA regions
Development of GC IT Infrastructure
bull Global Visions Technologybull SCDAA
bull Development of patient enrollment formsndash Development of patient profiles
bull Development of system to aggregate data to insure de-identification
bull Focused on using established terminology and nomenclature ndash PhenX (consensus measures for phenotypes and exposures) AHRQ raceethnicity
The GC User Interface
bull Enrollment
bull Profile design and completion
bull Use ldquoprofilesrdquo to gather information to assess needs and shape future initiatives
User Name
Password
Log In
Forgot Password
copy 2014 Global Vision Technologies IncContact Global Vision Technologies Inc if you have problems or questions
Privacy Policy | Terms and Conditions
Join the Program
Welcome to the ldquoGet Connectedrdquo
Registry
Role of Community Health Workers
1 Find Patients
2 Enroll in Get
Connected
3 Educate
4 Make Referrals to
EducatorCounselors for CC
Early Results
36 Community Health Workers trained
3152 children and adults with sickle cell disease enrolled
What about all of these other registries
bull Collaborate donrsquot duplicate
bull Complement
bull Broaden stakeholder base
bull Launch new initiatives
Include common stakeholders
Use common data elements terminology definitions
Acknowledgements
bull HRSA ndash Dr Donnell Ivy Andrea Williamsbull National Institute for Healthcare Quality ndash Drs Suzette
Oyeku and Scott Bernsbull American College of Medical Genetics ndash Dr Amy
Browerbull National SCDAA HRSA Project
ndash Sonja L Banksndash Jennifer Fieldsndash Sonya Rossndash Ashley Costonndash Meghan Ringgoldndash Leroy Hughes Jr
NORTHEAST REGION - Regions 2 amp 3
Pennsylvania SCDAA - Philadelphia Delaware Chapter
Childrens Sickle Cell Foundation
South Central PA Sickle Cell Council
New Jersey Sickle Cell Association of New Jersey
Delaware Tova Community Health Inc
New York The Sickle Cell Thalasemia Patient Network
Queens Sickle Cell Associaton
Maryland Maryland Sickle Cell Disease Association Inc
Virginia Sickle Cell Association Inc
Virgin Islands Virgin Islands
SOUTHEAST REGION - Region 4
Alabama Central Alabama Chapter of the Sickle Cell Foundation
Sickle Cell Foundation of Greater Montgomery
Georgia Sickle Cell Foundation of Georgia
North Carolina Piedmont Health Service and Sickle Cell Agency
Community Health Interventions amp Sickle Cell
South Carolina James R Clark Memorial Sickle Cell Foundation
Tennesse The Sickle Cell Foundation of Tennessee
Association of Sickle Cell Lower Chattahoochie Regional Support Group
MIDWEST REGION - Region 5
Illinois Sickle Cell Disease Association of Illinois
Indiana Martin Center Sickle Cell Initiative
Michigan Sickle Cell Disease Association of America MI
Ohio Ohio Sickle Cell and Health Association Inc
HEARTLAND REGION - Region 7
Missouri St Louis Sickle Cell Association
PACIFIC NORTWEST RGION - Regions 9 and 10
California Childrens Sickle Cell Foundation
Cayenne Wellness
Nevada Childrens Specialty of Nevada
Oregon Sickle Cell Anemia Foundation of Oregon
Stay Informed
Get Connected
Embrace a Sickle Cell CUhRE (Community Uniting Health and Research Environments)
Working towards healthier lives for children and
adults with sickle cell
SCDAArsquos Mission
bull ldquoto advocate for and enhance our membershiprsquos ability to improve the quality of health life and services for individuals families and communities affected by sickle cell disease and related conditions while promoting the search for a cure for all people in the world with sickle cell diseaserdquo
Clinical Care and Research Agenda
bull Increase access to high quality clinical carebull Improve disease-specific treatments and preventive therapiesbull Facilitate development of therapeutic innovationsbull Improve existing long-term therapies and curesbull Improve patient education on the clinical research processbull Increase patient involvement in clinical research process at every
stage including advocating for specific areas of research focus clinical trial design and development of patient reported outcomes initiatives to get meaningful research results to patients in a more timely manner
bull Improve health care decision-making tools and resourcesbull Develop and disseminate best practices in clinical carebull Develop resources for and Increase health care manpower with
knowledge and expertise in sickle cell disease
Sickle Cell Disease A Common AgendaTo Support a New Infrastructure
Increased Access to High Quality Health Care Across the Lifespan
Drug Development and Therapies that Improve Qualityof Life and Decrease Disease-related Complications
Low-risk Profile Cures Accessible for All People with Sickle Cell Disease
Challenges
Access to high quality care
bull Transitions of care
bull Access to information ndash disease self-management therapies advocacy and awareness
bull Patient concernsinterests - therapeutic approaches that may not focus on quality of life
bull Isolationsilos ndash children and adults with SCD families caregivers health care and research teams
Sickle Cell Disease A Common AgendaTo Support a New Infrastructure
Better informed children and adults with SCD by providing access to information resources and support
Better informed providers by providing access to SCD resources and sickle cell expertise
Improved efficiency on sickle cell initiatives by providinga common pathway for communication between sicklecell community stakeholders
Get Connected Initiative Purpose
bull Establish a network of children adults and families living with sickle cell disease and sickle cell trait SCDAA member organizations health care providers and other community-based organizations to distribute information related to clinical care research health services health policy and advocacy
bull Establish a registry for children and adults living with sickle cell for storage of medical information related to diagnosis (SCDSCT) and treatment
bull Developing on-line communities for information sharing and ldquopsychosocialrdquo support
Get Connected Initiative Purpose
bull Establish a network of providers educated about the unique health care and psychosocial needs of children and adults living with sickle cell disease
bull Connect children and adults with sickle cell disease to high quality resources for information on health care including behavioral health clinical research and ancillary health care resources
bull Establish a network to support clinical research through community-based research navigators
What is ldquoGet Connectedrdquo
Information sharing network and patient-powered registry
ndash provides high quality information about clinical care self care research and health advocacy issues related to sickle cell disease and sickle cell trait
ndash provides the storage of health information that enables patients to better navigate the health care system
ndash provides resources to access to disease-specific care and
ndash provides a common portal and a platform for research initiatives generated by the needs of our patient population
HRSA SICKLE CELL DISEASE NEWBORN SCREENING PROGRAM
Funding Opportunity Announcement HRSA-11-031
Awarded June 2015
Two-year project
Grant Goals
bull Create a national effort to develop implement and maintain a strategy to identify and assess the care quality and outcomes of individuals with sickle cell disease in order to improve access to comprehensive care
bull Increase the use of sickle cell educatorcounselors (eg community health workers) and
bull Increase the number of patients with care coordination follow-up and referral to medical homes for sickle cell patients
Grant Activities
bull Focus on selecting CBOs that are servicing the sickle cell community
bull Identify educate and train CHWs to locate children and adults with SCD
bull Connect children and adults to services if not connected
bull Enroll children and adults in Get Connected as a measurement of services provided and as a means to connect for future service provision
Grant Activities
bull Educate CHWs about hydroxyurea
bull Educate children and adults with SCD about hydroxyurea through CHWs directing consumers to CBO EducatorsCounselors and Medical Homes
bull Measure hydroxyurea awareness in Get Connected
bull 26 sites
bull 20 states
bull 5 HRSA regions
Development of GC IT Infrastructure
bull Global Visions Technologybull SCDAA
bull Development of patient enrollment formsndash Development of patient profiles
bull Development of system to aggregate data to insure de-identification
bull Focused on using established terminology and nomenclature ndash PhenX (consensus measures for phenotypes and exposures) AHRQ raceethnicity
The GC User Interface
bull Enrollment
bull Profile design and completion
bull Use ldquoprofilesrdquo to gather information to assess needs and shape future initiatives
User Name
Password
Log In
Forgot Password
copy 2014 Global Vision Technologies IncContact Global Vision Technologies Inc if you have problems or questions
Privacy Policy | Terms and Conditions
Join the Program
Welcome to the ldquoGet Connectedrdquo
Registry
Role of Community Health Workers
1 Find Patients
2 Enroll in Get
Connected
3 Educate
4 Make Referrals to
EducatorCounselors for CC
Early Results
36 Community Health Workers trained
3152 children and adults with sickle cell disease enrolled
What about all of these other registries
bull Collaborate donrsquot duplicate
bull Complement
bull Broaden stakeholder base
bull Launch new initiatives
Include common stakeholders
Use common data elements terminology definitions
Acknowledgements
bull HRSA ndash Dr Donnell Ivy Andrea Williamsbull National Institute for Healthcare Quality ndash Drs Suzette
Oyeku and Scott Bernsbull American College of Medical Genetics ndash Dr Amy
Browerbull National SCDAA HRSA Project
ndash Sonja L Banksndash Jennifer Fieldsndash Sonya Rossndash Ashley Costonndash Meghan Ringgoldndash Leroy Hughes Jr
NORTHEAST REGION - Regions 2 amp 3
Pennsylvania SCDAA - Philadelphia Delaware Chapter
Childrens Sickle Cell Foundation
South Central PA Sickle Cell Council
New Jersey Sickle Cell Association of New Jersey
Delaware Tova Community Health Inc
New York The Sickle Cell Thalasemia Patient Network
Queens Sickle Cell Associaton
Maryland Maryland Sickle Cell Disease Association Inc
Virginia Sickle Cell Association Inc
Virgin Islands Virgin Islands
SOUTHEAST REGION - Region 4
Alabama Central Alabama Chapter of the Sickle Cell Foundation
Sickle Cell Foundation of Greater Montgomery
Georgia Sickle Cell Foundation of Georgia
North Carolina Piedmont Health Service and Sickle Cell Agency
Community Health Interventions amp Sickle Cell
South Carolina James R Clark Memorial Sickle Cell Foundation
Tennesse The Sickle Cell Foundation of Tennessee
Association of Sickle Cell Lower Chattahoochie Regional Support Group
MIDWEST REGION - Region 5
Illinois Sickle Cell Disease Association of Illinois
Indiana Martin Center Sickle Cell Initiative
Michigan Sickle Cell Disease Association of America MI
Ohio Ohio Sickle Cell and Health Association Inc
HEARTLAND REGION - Region 7
Missouri St Louis Sickle Cell Association
PACIFIC NORTWEST RGION - Regions 9 and 10
California Childrens Sickle Cell Foundation
Cayenne Wellness
Nevada Childrens Specialty of Nevada
Oregon Sickle Cell Anemia Foundation of Oregon
Stay Informed
Get Connected
Embrace a Sickle Cell CUhRE (Community Uniting Health and Research Environments)
Working towards healthier lives for children and
adults with sickle cell
Clinical Care and Research Agenda
bull Increase access to high quality clinical carebull Improve disease-specific treatments and preventive therapiesbull Facilitate development of therapeutic innovationsbull Improve existing long-term therapies and curesbull Improve patient education on the clinical research processbull Increase patient involvement in clinical research process at every
stage including advocating for specific areas of research focus clinical trial design and development of patient reported outcomes initiatives to get meaningful research results to patients in a more timely manner
bull Improve health care decision-making tools and resourcesbull Develop and disseminate best practices in clinical carebull Develop resources for and Increase health care manpower with
knowledge and expertise in sickle cell disease
Sickle Cell Disease A Common AgendaTo Support a New Infrastructure
Increased Access to High Quality Health Care Across the Lifespan
Drug Development and Therapies that Improve Qualityof Life and Decrease Disease-related Complications
Low-risk Profile Cures Accessible for All People with Sickle Cell Disease
Challenges
Access to high quality care
bull Transitions of care
bull Access to information ndash disease self-management therapies advocacy and awareness
bull Patient concernsinterests - therapeutic approaches that may not focus on quality of life
bull Isolationsilos ndash children and adults with SCD families caregivers health care and research teams
Sickle Cell Disease A Common AgendaTo Support a New Infrastructure
Better informed children and adults with SCD by providing access to information resources and support
Better informed providers by providing access to SCD resources and sickle cell expertise
Improved efficiency on sickle cell initiatives by providinga common pathway for communication between sicklecell community stakeholders
Get Connected Initiative Purpose
bull Establish a network of children adults and families living with sickle cell disease and sickle cell trait SCDAA member organizations health care providers and other community-based organizations to distribute information related to clinical care research health services health policy and advocacy
bull Establish a registry for children and adults living with sickle cell for storage of medical information related to diagnosis (SCDSCT) and treatment
bull Developing on-line communities for information sharing and ldquopsychosocialrdquo support
Get Connected Initiative Purpose
bull Establish a network of providers educated about the unique health care and psychosocial needs of children and adults living with sickle cell disease
bull Connect children and adults with sickle cell disease to high quality resources for information on health care including behavioral health clinical research and ancillary health care resources
bull Establish a network to support clinical research through community-based research navigators
What is ldquoGet Connectedrdquo
Information sharing network and patient-powered registry
ndash provides high quality information about clinical care self care research and health advocacy issues related to sickle cell disease and sickle cell trait
ndash provides the storage of health information that enables patients to better navigate the health care system
ndash provides resources to access to disease-specific care and
ndash provides a common portal and a platform for research initiatives generated by the needs of our patient population
HRSA SICKLE CELL DISEASE NEWBORN SCREENING PROGRAM
Funding Opportunity Announcement HRSA-11-031
Awarded June 2015
Two-year project
Grant Goals
bull Create a national effort to develop implement and maintain a strategy to identify and assess the care quality and outcomes of individuals with sickle cell disease in order to improve access to comprehensive care
bull Increase the use of sickle cell educatorcounselors (eg community health workers) and
bull Increase the number of patients with care coordination follow-up and referral to medical homes for sickle cell patients
Grant Activities
bull Focus on selecting CBOs that are servicing the sickle cell community
bull Identify educate and train CHWs to locate children and adults with SCD
bull Connect children and adults to services if not connected
bull Enroll children and adults in Get Connected as a measurement of services provided and as a means to connect for future service provision
Grant Activities
bull Educate CHWs about hydroxyurea
bull Educate children and adults with SCD about hydroxyurea through CHWs directing consumers to CBO EducatorsCounselors and Medical Homes
bull Measure hydroxyurea awareness in Get Connected
bull 26 sites
bull 20 states
bull 5 HRSA regions
Development of GC IT Infrastructure
bull Global Visions Technologybull SCDAA
bull Development of patient enrollment formsndash Development of patient profiles
bull Development of system to aggregate data to insure de-identification
bull Focused on using established terminology and nomenclature ndash PhenX (consensus measures for phenotypes and exposures) AHRQ raceethnicity
The GC User Interface
bull Enrollment
bull Profile design and completion
bull Use ldquoprofilesrdquo to gather information to assess needs and shape future initiatives
User Name
Password
Log In
Forgot Password
copy 2014 Global Vision Technologies IncContact Global Vision Technologies Inc if you have problems or questions
Privacy Policy | Terms and Conditions
Join the Program
Welcome to the ldquoGet Connectedrdquo
Registry
Role of Community Health Workers
1 Find Patients
2 Enroll in Get
Connected
3 Educate
4 Make Referrals to
EducatorCounselors for CC
Early Results
36 Community Health Workers trained
3152 children and adults with sickle cell disease enrolled
What about all of these other registries
bull Collaborate donrsquot duplicate
bull Complement
bull Broaden stakeholder base
bull Launch new initiatives
Include common stakeholders
Use common data elements terminology definitions
Acknowledgements
bull HRSA ndash Dr Donnell Ivy Andrea Williamsbull National Institute for Healthcare Quality ndash Drs Suzette
Oyeku and Scott Bernsbull American College of Medical Genetics ndash Dr Amy
Browerbull National SCDAA HRSA Project
ndash Sonja L Banksndash Jennifer Fieldsndash Sonya Rossndash Ashley Costonndash Meghan Ringgoldndash Leroy Hughes Jr
NORTHEAST REGION - Regions 2 amp 3
Pennsylvania SCDAA - Philadelphia Delaware Chapter
Childrens Sickle Cell Foundation
South Central PA Sickle Cell Council
New Jersey Sickle Cell Association of New Jersey
Delaware Tova Community Health Inc
New York The Sickle Cell Thalasemia Patient Network
Queens Sickle Cell Associaton
Maryland Maryland Sickle Cell Disease Association Inc
Virginia Sickle Cell Association Inc
Virgin Islands Virgin Islands
SOUTHEAST REGION - Region 4
Alabama Central Alabama Chapter of the Sickle Cell Foundation
Sickle Cell Foundation of Greater Montgomery
Georgia Sickle Cell Foundation of Georgia
North Carolina Piedmont Health Service and Sickle Cell Agency
Community Health Interventions amp Sickle Cell
South Carolina James R Clark Memorial Sickle Cell Foundation
Tennesse The Sickle Cell Foundation of Tennessee
Association of Sickle Cell Lower Chattahoochie Regional Support Group
MIDWEST REGION - Region 5
Illinois Sickle Cell Disease Association of Illinois
Indiana Martin Center Sickle Cell Initiative
Michigan Sickle Cell Disease Association of America MI
Ohio Ohio Sickle Cell and Health Association Inc
HEARTLAND REGION - Region 7
Missouri St Louis Sickle Cell Association
PACIFIC NORTWEST RGION - Regions 9 and 10
California Childrens Sickle Cell Foundation
Cayenne Wellness
Nevada Childrens Specialty of Nevada
Oregon Sickle Cell Anemia Foundation of Oregon
Stay Informed
Get Connected
Embrace a Sickle Cell CUhRE (Community Uniting Health and Research Environments)
Working towards healthier lives for children and
adults with sickle cell
Sickle Cell Disease A Common AgendaTo Support a New Infrastructure
Increased Access to High Quality Health Care Across the Lifespan
Drug Development and Therapies that Improve Qualityof Life and Decrease Disease-related Complications
Low-risk Profile Cures Accessible for All People with Sickle Cell Disease
Challenges
Access to high quality care
bull Transitions of care
bull Access to information ndash disease self-management therapies advocacy and awareness
bull Patient concernsinterests - therapeutic approaches that may not focus on quality of life
bull Isolationsilos ndash children and adults with SCD families caregivers health care and research teams
Sickle Cell Disease A Common AgendaTo Support a New Infrastructure
Better informed children and adults with SCD by providing access to information resources and support
Better informed providers by providing access to SCD resources and sickle cell expertise
Improved efficiency on sickle cell initiatives by providinga common pathway for communication between sicklecell community stakeholders
Get Connected Initiative Purpose
bull Establish a network of children adults and families living with sickle cell disease and sickle cell trait SCDAA member organizations health care providers and other community-based organizations to distribute information related to clinical care research health services health policy and advocacy
bull Establish a registry for children and adults living with sickle cell for storage of medical information related to diagnosis (SCDSCT) and treatment
bull Developing on-line communities for information sharing and ldquopsychosocialrdquo support
Get Connected Initiative Purpose
bull Establish a network of providers educated about the unique health care and psychosocial needs of children and adults living with sickle cell disease
bull Connect children and adults with sickle cell disease to high quality resources for information on health care including behavioral health clinical research and ancillary health care resources
bull Establish a network to support clinical research through community-based research navigators
What is ldquoGet Connectedrdquo
Information sharing network and patient-powered registry
ndash provides high quality information about clinical care self care research and health advocacy issues related to sickle cell disease and sickle cell trait
ndash provides the storage of health information that enables patients to better navigate the health care system
ndash provides resources to access to disease-specific care and
ndash provides a common portal and a platform for research initiatives generated by the needs of our patient population
HRSA SICKLE CELL DISEASE NEWBORN SCREENING PROGRAM
Funding Opportunity Announcement HRSA-11-031
Awarded June 2015
Two-year project
Grant Goals
bull Create a national effort to develop implement and maintain a strategy to identify and assess the care quality and outcomes of individuals with sickle cell disease in order to improve access to comprehensive care
bull Increase the use of sickle cell educatorcounselors (eg community health workers) and
bull Increase the number of patients with care coordination follow-up and referral to medical homes for sickle cell patients
Grant Activities
bull Focus on selecting CBOs that are servicing the sickle cell community
bull Identify educate and train CHWs to locate children and adults with SCD
bull Connect children and adults to services if not connected
bull Enroll children and adults in Get Connected as a measurement of services provided and as a means to connect for future service provision
Grant Activities
bull Educate CHWs about hydroxyurea
bull Educate children and adults with SCD about hydroxyurea through CHWs directing consumers to CBO EducatorsCounselors and Medical Homes
bull Measure hydroxyurea awareness in Get Connected
bull 26 sites
bull 20 states
bull 5 HRSA regions
Development of GC IT Infrastructure
bull Global Visions Technologybull SCDAA
bull Development of patient enrollment formsndash Development of patient profiles
bull Development of system to aggregate data to insure de-identification
bull Focused on using established terminology and nomenclature ndash PhenX (consensus measures for phenotypes and exposures) AHRQ raceethnicity
The GC User Interface
bull Enrollment
bull Profile design and completion
bull Use ldquoprofilesrdquo to gather information to assess needs and shape future initiatives
User Name
Password
Log In
Forgot Password
copy 2014 Global Vision Technologies IncContact Global Vision Technologies Inc if you have problems or questions
Privacy Policy | Terms and Conditions
Join the Program
Welcome to the ldquoGet Connectedrdquo
Registry
Role of Community Health Workers
1 Find Patients
2 Enroll in Get
Connected
3 Educate
4 Make Referrals to
EducatorCounselors for CC
Early Results
36 Community Health Workers trained
3152 children and adults with sickle cell disease enrolled
What about all of these other registries
bull Collaborate donrsquot duplicate
bull Complement
bull Broaden stakeholder base
bull Launch new initiatives
Include common stakeholders
Use common data elements terminology definitions
Acknowledgements
bull HRSA ndash Dr Donnell Ivy Andrea Williamsbull National Institute for Healthcare Quality ndash Drs Suzette
Oyeku and Scott Bernsbull American College of Medical Genetics ndash Dr Amy
Browerbull National SCDAA HRSA Project
ndash Sonja L Banksndash Jennifer Fieldsndash Sonya Rossndash Ashley Costonndash Meghan Ringgoldndash Leroy Hughes Jr
NORTHEAST REGION - Regions 2 amp 3
Pennsylvania SCDAA - Philadelphia Delaware Chapter
Childrens Sickle Cell Foundation
South Central PA Sickle Cell Council
New Jersey Sickle Cell Association of New Jersey
Delaware Tova Community Health Inc
New York The Sickle Cell Thalasemia Patient Network
Queens Sickle Cell Associaton
Maryland Maryland Sickle Cell Disease Association Inc
Virginia Sickle Cell Association Inc
Virgin Islands Virgin Islands
SOUTHEAST REGION - Region 4
Alabama Central Alabama Chapter of the Sickle Cell Foundation
Sickle Cell Foundation of Greater Montgomery
Georgia Sickle Cell Foundation of Georgia
North Carolina Piedmont Health Service and Sickle Cell Agency
Community Health Interventions amp Sickle Cell
South Carolina James R Clark Memorial Sickle Cell Foundation
Tennesse The Sickle Cell Foundation of Tennessee
Association of Sickle Cell Lower Chattahoochie Regional Support Group
MIDWEST REGION - Region 5
Illinois Sickle Cell Disease Association of Illinois
Indiana Martin Center Sickle Cell Initiative
Michigan Sickle Cell Disease Association of America MI
Ohio Ohio Sickle Cell and Health Association Inc
HEARTLAND REGION - Region 7
Missouri St Louis Sickle Cell Association
PACIFIC NORTWEST RGION - Regions 9 and 10
California Childrens Sickle Cell Foundation
Cayenne Wellness
Nevada Childrens Specialty of Nevada
Oregon Sickle Cell Anemia Foundation of Oregon
Stay Informed
Get Connected
Embrace a Sickle Cell CUhRE (Community Uniting Health and Research Environments)
Working towards healthier lives for children and
adults with sickle cell
Challenges
Access to high quality care
bull Transitions of care
bull Access to information ndash disease self-management therapies advocacy and awareness
bull Patient concernsinterests - therapeutic approaches that may not focus on quality of life
bull Isolationsilos ndash children and adults with SCD families caregivers health care and research teams
Sickle Cell Disease A Common AgendaTo Support a New Infrastructure
Better informed children and adults with SCD by providing access to information resources and support
Better informed providers by providing access to SCD resources and sickle cell expertise
Improved efficiency on sickle cell initiatives by providinga common pathway for communication between sicklecell community stakeholders
Get Connected Initiative Purpose
bull Establish a network of children adults and families living with sickle cell disease and sickle cell trait SCDAA member organizations health care providers and other community-based organizations to distribute information related to clinical care research health services health policy and advocacy
bull Establish a registry for children and adults living with sickle cell for storage of medical information related to diagnosis (SCDSCT) and treatment
bull Developing on-line communities for information sharing and ldquopsychosocialrdquo support
Get Connected Initiative Purpose
bull Establish a network of providers educated about the unique health care and psychosocial needs of children and adults living with sickle cell disease
bull Connect children and adults with sickle cell disease to high quality resources for information on health care including behavioral health clinical research and ancillary health care resources
bull Establish a network to support clinical research through community-based research navigators
What is ldquoGet Connectedrdquo
Information sharing network and patient-powered registry
ndash provides high quality information about clinical care self care research and health advocacy issues related to sickle cell disease and sickle cell trait
ndash provides the storage of health information that enables patients to better navigate the health care system
ndash provides resources to access to disease-specific care and
ndash provides a common portal and a platform for research initiatives generated by the needs of our patient population
HRSA SICKLE CELL DISEASE NEWBORN SCREENING PROGRAM
Funding Opportunity Announcement HRSA-11-031
Awarded June 2015
Two-year project
Grant Goals
bull Create a national effort to develop implement and maintain a strategy to identify and assess the care quality and outcomes of individuals with sickle cell disease in order to improve access to comprehensive care
bull Increase the use of sickle cell educatorcounselors (eg community health workers) and
bull Increase the number of patients with care coordination follow-up and referral to medical homes for sickle cell patients
Grant Activities
bull Focus on selecting CBOs that are servicing the sickle cell community
bull Identify educate and train CHWs to locate children and adults with SCD
bull Connect children and adults to services if not connected
bull Enroll children and adults in Get Connected as a measurement of services provided and as a means to connect for future service provision
Grant Activities
bull Educate CHWs about hydroxyurea
bull Educate children and adults with SCD about hydroxyurea through CHWs directing consumers to CBO EducatorsCounselors and Medical Homes
bull Measure hydroxyurea awareness in Get Connected
bull 26 sites
bull 20 states
bull 5 HRSA regions
Development of GC IT Infrastructure
bull Global Visions Technologybull SCDAA
bull Development of patient enrollment formsndash Development of patient profiles
bull Development of system to aggregate data to insure de-identification
bull Focused on using established terminology and nomenclature ndash PhenX (consensus measures for phenotypes and exposures) AHRQ raceethnicity
The GC User Interface
bull Enrollment
bull Profile design and completion
bull Use ldquoprofilesrdquo to gather information to assess needs and shape future initiatives
User Name
Password
Log In
Forgot Password
copy 2014 Global Vision Technologies IncContact Global Vision Technologies Inc if you have problems or questions
Privacy Policy | Terms and Conditions
Join the Program
Welcome to the ldquoGet Connectedrdquo
Registry
Role of Community Health Workers
1 Find Patients
2 Enroll in Get
Connected
3 Educate
4 Make Referrals to
EducatorCounselors for CC
Early Results
36 Community Health Workers trained
3152 children and adults with sickle cell disease enrolled
What about all of these other registries
bull Collaborate donrsquot duplicate
bull Complement
bull Broaden stakeholder base
bull Launch new initiatives
Include common stakeholders
Use common data elements terminology definitions
Acknowledgements
bull HRSA ndash Dr Donnell Ivy Andrea Williamsbull National Institute for Healthcare Quality ndash Drs Suzette
Oyeku and Scott Bernsbull American College of Medical Genetics ndash Dr Amy
Browerbull National SCDAA HRSA Project
ndash Sonja L Banksndash Jennifer Fieldsndash Sonya Rossndash Ashley Costonndash Meghan Ringgoldndash Leroy Hughes Jr
NORTHEAST REGION - Regions 2 amp 3
Pennsylvania SCDAA - Philadelphia Delaware Chapter
Childrens Sickle Cell Foundation
South Central PA Sickle Cell Council
New Jersey Sickle Cell Association of New Jersey
Delaware Tova Community Health Inc
New York The Sickle Cell Thalasemia Patient Network
Queens Sickle Cell Associaton
Maryland Maryland Sickle Cell Disease Association Inc
Virginia Sickle Cell Association Inc
Virgin Islands Virgin Islands
SOUTHEAST REGION - Region 4
Alabama Central Alabama Chapter of the Sickle Cell Foundation
Sickle Cell Foundation of Greater Montgomery
Georgia Sickle Cell Foundation of Georgia
North Carolina Piedmont Health Service and Sickle Cell Agency
Community Health Interventions amp Sickle Cell
South Carolina James R Clark Memorial Sickle Cell Foundation
Tennesse The Sickle Cell Foundation of Tennessee
Association of Sickle Cell Lower Chattahoochie Regional Support Group
MIDWEST REGION - Region 5
Illinois Sickle Cell Disease Association of Illinois
Indiana Martin Center Sickle Cell Initiative
Michigan Sickle Cell Disease Association of America MI
Ohio Ohio Sickle Cell and Health Association Inc
HEARTLAND REGION - Region 7
Missouri St Louis Sickle Cell Association
PACIFIC NORTWEST RGION - Regions 9 and 10
California Childrens Sickle Cell Foundation
Cayenne Wellness
Nevada Childrens Specialty of Nevada
Oregon Sickle Cell Anemia Foundation of Oregon
Stay Informed
Get Connected
Embrace a Sickle Cell CUhRE (Community Uniting Health and Research Environments)
Working towards healthier lives for children and
adults with sickle cell
Sickle Cell Disease A Common AgendaTo Support a New Infrastructure
Better informed children and adults with SCD by providing access to information resources and support
Better informed providers by providing access to SCD resources and sickle cell expertise
Improved efficiency on sickle cell initiatives by providinga common pathway for communication between sicklecell community stakeholders
Get Connected Initiative Purpose
bull Establish a network of children adults and families living with sickle cell disease and sickle cell trait SCDAA member organizations health care providers and other community-based organizations to distribute information related to clinical care research health services health policy and advocacy
bull Establish a registry for children and adults living with sickle cell for storage of medical information related to diagnosis (SCDSCT) and treatment
bull Developing on-line communities for information sharing and ldquopsychosocialrdquo support
Get Connected Initiative Purpose
bull Establish a network of providers educated about the unique health care and psychosocial needs of children and adults living with sickle cell disease
bull Connect children and adults with sickle cell disease to high quality resources for information on health care including behavioral health clinical research and ancillary health care resources
bull Establish a network to support clinical research through community-based research navigators
What is ldquoGet Connectedrdquo
Information sharing network and patient-powered registry
ndash provides high quality information about clinical care self care research and health advocacy issues related to sickle cell disease and sickle cell trait
ndash provides the storage of health information that enables patients to better navigate the health care system
ndash provides resources to access to disease-specific care and
ndash provides a common portal and a platform for research initiatives generated by the needs of our patient population
HRSA SICKLE CELL DISEASE NEWBORN SCREENING PROGRAM
Funding Opportunity Announcement HRSA-11-031
Awarded June 2015
Two-year project
Grant Goals
bull Create a national effort to develop implement and maintain a strategy to identify and assess the care quality and outcomes of individuals with sickle cell disease in order to improve access to comprehensive care
bull Increase the use of sickle cell educatorcounselors (eg community health workers) and
bull Increase the number of patients with care coordination follow-up and referral to medical homes for sickle cell patients
Grant Activities
bull Focus on selecting CBOs that are servicing the sickle cell community
bull Identify educate and train CHWs to locate children and adults with SCD
bull Connect children and adults to services if not connected
bull Enroll children and adults in Get Connected as a measurement of services provided and as a means to connect for future service provision
Grant Activities
bull Educate CHWs about hydroxyurea
bull Educate children and adults with SCD about hydroxyurea through CHWs directing consumers to CBO EducatorsCounselors and Medical Homes
bull Measure hydroxyurea awareness in Get Connected
bull 26 sites
bull 20 states
bull 5 HRSA regions
Development of GC IT Infrastructure
bull Global Visions Technologybull SCDAA
bull Development of patient enrollment formsndash Development of patient profiles
bull Development of system to aggregate data to insure de-identification
bull Focused on using established terminology and nomenclature ndash PhenX (consensus measures for phenotypes and exposures) AHRQ raceethnicity
The GC User Interface
bull Enrollment
bull Profile design and completion
bull Use ldquoprofilesrdquo to gather information to assess needs and shape future initiatives
User Name
Password
Log In
Forgot Password
copy 2014 Global Vision Technologies IncContact Global Vision Technologies Inc if you have problems or questions
Privacy Policy | Terms and Conditions
Join the Program
Welcome to the ldquoGet Connectedrdquo
Registry
Role of Community Health Workers
1 Find Patients
2 Enroll in Get
Connected
3 Educate
4 Make Referrals to
EducatorCounselors for CC
Early Results
36 Community Health Workers trained
3152 children and adults with sickle cell disease enrolled
What about all of these other registries
bull Collaborate donrsquot duplicate
bull Complement
bull Broaden stakeholder base
bull Launch new initiatives
Include common stakeholders
Use common data elements terminology definitions
Acknowledgements
bull HRSA ndash Dr Donnell Ivy Andrea Williamsbull National Institute for Healthcare Quality ndash Drs Suzette
Oyeku and Scott Bernsbull American College of Medical Genetics ndash Dr Amy
Browerbull National SCDAA HRSA Project
ndash Sonja L Banksndash Jennifer Fieldsndash Sonya Rossndash Ashley Costonndash Meghan Ringgoldndash Leroy Hughes Jr
NORTHEAST REGION - Regions 2 amp 3
Pennsylvania SCDAA - Philadelphia Delaware Chapter
Childrens Sickle Cell Foundation
South Central PA Sickle Cell Council
New Jersey Sickle Cell Association of New Jersey
Delaware Tova Community Health Inc
New York The Sickle Cell Thalasemia Patient Network
Queens Sickle Cell Associaton
Maryland Maryland Sickle Cell Disease Association Inc
Virginia Sickle Cell Association Inc
Virgin Islands Virgin Islands
SOUTHEAST REGION - Region 4
Alabama Central Alabama Chapter of the Sickle Cell Foundation
Sickle Cell Foundation of Greater Montgomery
Georgia Sickle Cell Foundation of Georgia
North Carolina Piedmont Health Service and Sickle Cell Agency
Community Health Interventions amp Sickle Cell
South Carolina James R Clark Memorial Sickle Cell Foundation
Tennesse The Sickle Cell Foundation of Tennessee
Association of Sickle Cell Lower Chattahoochie Regional Support Group
MIDWEST REGION - Region 5
Illinois Sickle Cell Disease Association of Illinois
Indiana Martin Center Sickle Cell Initiative
Michigan Sickle Cell Disease Association of America MI
Ohio Ohio Sickle Cell and Health Association Inc
HEARTLAND REGION - Region 7
Missouri St Louis Sickle Cell Association
PACIFIC NORTWEST RGION - Regions 9 and 10
California Childrens Sickle Cell Foundation
Cayenne Wellness
Nevada Childrens Specialty of Nevada
Oregon Sickle Cell Anemia Foundation of Oregon
Stay Informed
Get Connected
Embrace a Sickle Cell CUhRE (Community Uniting Health and Research Environments)
Working towards healthier lives for children and
adults with sickle cell
Get Connected Initiative Purpose
bull Establish a network of children adults and families living with sickle cell disease and sickle cell trait SCDAA member organizations health care providers and other community-based organizations to distribute information related to clinical care research health services health policy and advocacy
bull Establish a registry for children and adults living with sickle cell for storage of medical information related to diagnosis (SCDSCT) and treatment
bull Developing on-line communities for information sharing and ldquopsychosocialrdquo support
Get Connected Initiative Purpose
bull Establish a network of providers educated about the unique health care and psychosocial needs of children and adults living with sickle cell disease
bull Connect children and adults with sickle cell disease to high quality resources for information on health care including behavioral health clinical research and ancillary health care resources
bull Establish a network to support clinical research through community-based research navigators
What is ldquoGet Connectedrdquo
Information sharing network and patient-powered registry
ndash provides high quality information about clinical care self care research and health advocacy issues related to sickle cell disease and sickle cell trait
ndash provides the storage of health information that enables patients to better navigate the health care system
ndash provides resources to access to disease-specific care and
ndash provides a common portal and a platform for research initiatives generated by the needs of our patient population
HRSA SICKLE CELL DISEASE NEWBORN SCREENING PROGRAM
Funding Opportunity Announcement HRSA-11-031
Awarded June 2015
Two-year project
Grant Goals
bull Create a national effort to develop implement and maintain a strategy to identify and assess the care quality and outcomes of individuals with sickle cell disease in order to improve access to comprehensive care
bull Increase the use of sickle cell educatorcounselors (eg community health workers) and
bull Increase the number of patients with care coordination follow-up and referral to medical homes for sickle cell patients
Grant Activities
bull Focus on selecting CBOs that are servicing the sickle cell community
bull Identify educate and train CHWs to locate children and adults with SCD
bull Connect children and adults to services if not connected
bull Enroll children and adults in Get Connected as a measurement of services provided and as a means to connect for future service provision
Grant Activities
bull Educate CHWs about hydroxyurea
bull Educate children and adults with SCD about hydroxyurea through CHWs directing consumers to CBO EducatorsCounselors and Medical Homes
bull Measure hydroxyurea awareness in Get Connected
bull 26 sites
bull 20 states
bull 5 HRSA regions
Development of GC IT Infrastructure
bull Global Visions Technologybull SCDAA
bull Development of patient enrollment formsndash Development of patient profiles
bull Development of system to aggregate data to insure de-identification
bull Focused on using established terminology and nomenclature ndash PhenX (consensus measures for phenotypes and exposures) AHRQ raceethnicity
The GC User Interface
bull Enrollment
bull Profile design and completion
bull Use ldquoprofilesrdquo to gather information to assess needs and shape future initiatives
User Name
Password
Log In
Forgot Password
copy 2014 Global Vision Technologies IncContact Global Vision Technologies Inc if you have problems or questions
Privacy Policy | Terms and Conditions
Join the Program
Welcome to the ldquoGet Connectedrdquo
Registry
Role of Community Health Workers
1 Find Patients
2 Enroll in Get
Connected
3 Educate
4 Make Referrals to
EducatorCounselors for CC
Early Results
36 Community Health Workers trained
3152 children and adults with sickle cell disease enrolled
What about all of these other registries
bull Collaborate donrsquot duplicate
bull Complement
bull Broaden stakeholder base
bull Launch new initiatives
Include common stakeholders
Use common data elements terminology definitions
Acknowledgements
bull HRSA ndash Dr Donnell Ivy Andrea Williamsbull National Institute for Healthcare Quality ndash Drs Suzette
Oyeku and Scott Bernsbull American College of Medical Genetics ndash Dr Amy
Browerbull National SCDAA HRSA Project
ndash Sonja L Banksndash Jennifer Fieldsndash Sonya Rossndash Ashley Costonndash Meghan Ringgoldndash Leroy Hughes Jr
NORTHEAST REGION - Regions 2 amp 3
Pennsylvania SCDAA - Philadelphia Delaware Chapter
Childrens Sickle Cell Foundation
South Central PA Sickle Cell Council
New Jersey Sickle Cell Association of New Jersey
Delaware Tova Community Health Inc
New York The Sickle Cell Thalasemia Patient Network
Queens Sickle Cell Associaton
Maryland Maryland Sickle Cell Disease Association Inc
Virginia Sickle Cell Association Inc
Virgin Islands Virgin Islands
SOUTHEAST REGION - Region 4
Alabama Central Alabama Chapter of the Sickle Cell Foundation
Sickle Cell Foundation of Greater Montgomery
Georgia Sickle Cell Foundation of Georgia
North Carolina Piedmont Health Service and Sickle Cell Agency
Community Health Interventions amp Sickle Cell
South Carolina James R Clark Memorial Sickle Cell Foundation
Tennesse The Sickle Cell Foundation of Tennessee
Association of Sickle Cell Lower Chattahoochie Regional Support Group
MIDWEST REGION - Region 5
Illinois Sickle Cell Disease Association of Illinois
Indiana Martin Center Sickle Cell Initiative
Michigan Sickle Cell Disease Association of America MI
Ohio Ohio Sickle Cell and Health Association Inc
HEARTLAND REGION - Region 7
Missouri St Louis Sickle Cell Association
PACIFIC NORTWEST RGION - Regions 9 and 10
California Childrens Sickle Cell Foundation
Cayenne Wellness
Nevada Childrens Specialty of Nevada
Oregon Sickle Cell Anemia Foundation of Oregon
Stay Informed
Get Connected
Embrace a Sickle Cell CUhRE (Community Uniting Health and Research Environments)
Working towards healthier lives for children and
adults with sickle cell
Get Connected Initiative Purpose
bull Establish a network of providers educated about the unique health care and psychosocial needs of children and adults living with sickle cell disease
bull Connect children and adults with sickle cell disease to high quality resources for information on health care including behavioral health clinical research and ancillary health care resources
bull Establish a network to support clinical research through community-based research navigators
What is ldquoGet Connectedrdquo
Information sharing network and patient-powered registry
ndash provides high quality information about clinical care self care research and health advocacy issues related to sickle cell disease and sickle cell trait
ndash provides the storage of health information that enables patients to better navigate the health care system
ndash provides resources to access to disease-specific care and
ndash provides a common portal and a platform for research initiatives generated by the needs of our patient population
HRSA SICKLE CELL DISEASE NEWBORN SCREENING PROGRAM
Funding Opportunity Announcement HRSA-11-031
Awarded June 2015
Two-year project
Grant Goals
bull Create a national effort to develop implement and maintain a strategy to identify and assess the care quality and outcomes of individuals with sickle cell disease in order to improve access to comprehensive care
bull Increase the use of sickle cell educatorcounselors (eg community health workers) and
bull Increase the number of patients with care coordination follow-up and referral to medical homes for sickle cell patients
Grant Activities
bull Focus on selecting CBOs that are servicing the sickle cell community
bull Identify educate and train CHWs to locate children and adults with SCD
bull Connect children and adults to services if not connected
bull Enroll children and adults in Get Connected as a measurement of services provided and as a means to connect for future service provision
Grant Activities
bull Educate CHWs about hydroxyurea
bull Educate children and adults with SCD about hydroxyurea through CHWs directing consumers to CBO EducatorsCounselors and Medical Homes
bull Measure hydroxyurea awareness in Get Connected
bull 26 sites
bull 20 states
bull 5 HRSA regions
Development of GC IT Infrastructure
bull Global Visions Technologybull SCDAA
bull Development of patient enrollment formsndash Development of patient profiles
bull Development of system to aggregate data to insure de-identification
bull Focused on using established terminology and nomenclature ndash PhenX (consensus measures for phenotypes and exposures) AHRQ raceethnicity
The GC User Interface
bull Enrollment
bull Profile design and completion
bull Use ldquoprofilesrdquo to gather information to assess needs and shape future initiatives
User Name
Password
Log In
Forgot Password
copy 2014 Global Vision Technologies IncContact Global Vision Technologies Inc if you have problems or questions
Privacy Policy | Terms and Conditions
Join the Program
Welcome to the ldquoGet Connectedrdquo
Registry
Role of Community Health Workers
1 Find Patients
2 Enroll in Get
Connected
3 Educate
4 Make Referrals to
EducatorCounselors for CC
Early Results
36 Community Health Workers trained
3152 children and adults with sickle cell disease enrolled
What about all of these other registries
bull Collaborate donrsquot duplicate
bull Complement
bull Broaden stakeholder base
bull Launch new initiatives
Include common stakeholders
Use common data elements terminology definitions
Acknowledgements
bull HRSA ndash Dr Donnell Ivy Andrea Williamsbull National Institute for Healthcare Quality ndash Drs Suzette
Oyeku and Scott Bernsbull American College of Medical Genetics ndash Dr Amy
Browerbull National SCDAA HRSA Project
ndash Sonja L Banksndash Jennifer Fieldsndash Sonya Rossndash Ashley Costonndash Meghan Ringgoldndash Leroy Hughes Jr
NORTHEAST REGION - Regions 2 amp 3
Pennsylvania SCDAA - Philadelphia Delaware Chapter
Childrens Sickle Cell Foundation
South Central PA Sickle Cell Council
New Jersey Sickle Cell Association of New Jersey
Delaware Tova Community Health Inc
New York The Sickle Cell Thalasemia Patient Network
Queens Sickle Cell Associaton
Maryland Maryland Sickle Cell Disease Association Inc
Virginia Sickle Cell Association Inc
Virgin Islands Virgin Islands
SOUTHEAST REGION - Region 4
Alabama Central Alabama Chapter of the Sickle Cell Foundation
Sickle Cell Foundation of Greater Montgomery
Georgia Sickle Cell Foundation of Georgia
North Carolina Piedmont Health Service and Sickle Cell Agency
Community Health Interventions amp Sickle Cell
South Carolina James R Clark Memorial Sickle Cell Foundation
Tennesse The Sickle Cell Foundation of Tennessee
Association of Sickle Cell Lower Chattahoochie Regional Support Group
MIDWEST REGION - Region 5
Illinois Sickle Cell Disease Association of Illinois
Indiana Martin Center Sickle Cell Initiative
Michigan Sickle Cell Disease Association of America MI
Ohio Ohio Sickle Cell and Health Association Inc
HEARTLAND REGION - Region 7
Missouri St Louis Sickle Cell Association
PACIFIC NORTWEST RGION - Regions 9 and 10
California Childrens Sickle Cell Foundation
Cayenne Wellness
Nevada Childrens Specialty of Nevada
Oregon Sickle Cell Anemia Foundation of Oregon
Stay Informed
Get Connected
Embrace a Sickle Cell CUhRE (Community Uniting Health and Research Environments)
Working towards healthier lives for children and
adults with sickle cell
What is ldquoGet Connectedrdquo
Information sharing network and patient-powered registry
ndash provides high quality information about clinical care self care research and health advocacy issues related to sickle cell disease and sickle cell trait
ndash provides the storage of health information that enables patients to better navigate the health care system
ndash provides resources to access to disease-specific care and
ndash provides a common portal and a platform for research initiatives generated by the needs of our patient population
HRSA SICKLE CELL DISEASE NEWBORN SCREENING PROGRAM
Funding Opportunity Announcement HRSA-11-031
Awarded June 2015
Two-year project
Grant Goals
bull Create a national effort to develop implement and maintain a strategy to identify and assess the care quality and outcomes of individuals with sickle cell disease in order to improve access to comprehensive care
bull Increase the use of sickle cell educatorcounselors (eg community health workers) and
bull Increase the number of patients with care coordination follow-up and referral to medical homes for sickle cell patients
Grant Activities
bull Focus on selecting CBOs that are servicing the sickle cell community
bull Identify educate and train CHWs to locate children and adults with SCD
bull Connect children and adults to services if not connected
bull Enroll children and adults in Get Connected as a measurement of services provided and as a means to connect for future service provision
Grant Activities
bull Educate CHWs about hydroxyurea
bull Educate children and adults with SCD about hydroxyurea through CHWs directing consumers to CBO EducatorsCounselors and Medical Homes
bull Measure hydroxyurea awareness in Get Connected
bull 26 sites
bull 20 states
bull 5 HRSA regions
Development of GC IT Infrastructure
bull Global Visions Technologybull SCDAA
bull Development of patient enrollment formsndash Development of patient profiles
bull Development of system to aggregate data to insure de-identification
bull Focused on using established terminology and nomenclature ndash PhenX (consensus measures for phenotypes and exposures) AHRQ raceethnicity
The GC User Interface
bull Enrollment
bull Profile design and completion
bull Use ldquoprofilesrdquo to gather information to assess needs and shape future initiatives
User Name
Password
Log In
Forgot Password
copy 2014 Global Vision Technologies IncContact Global Vision Technologies Inc if you have problems or questions
Privacy Policy | Terms and Conditions
Join the Program
Welcome to the ldquoGet Connectedrdquo
Registry
Role of Community Health Workers
1 Find Patients
2 Enroll in Get
Connected
3 Educate
4 Make Referrals to
EducatorCounselors for CC
Early Results
36 Community Health Workers trained
3152 children and adults with sickle cell disease enrolled
What about all of these other registries
bull Collaborate donrsquot duplicate
bull Complement
bull Broaden stakeholder base
bull Launch new initiatives
Include common stakeholders
Use common data elements terminology definitions
Acknowledgements
bull HRSA ndash Dr Donnell Ivy Andrea Williamsbull National Institute for Healthcare Quality ndash Drs Suzette
Oyeku and Scott Bernsbull American College of Medical Genetics ndash Dr Amy
Browerbull National SCDAA HRSA Project
ndash Sonja L Banksndash Jennifer Fieldsndash Sonya Rossndash Ashley Costonndash Meghan Ringgoldndash Leroy Hughes Jr
NORTHEAST REGION - Regions 2 amp 3
Pennsylvania SCDAA - Philadelphia Delaware Chapter
Childrens Sickle Cell Foundation
South Central PA Sickle Cell Council
New Jersey Sickle Cell Association of New Jersey
Delaware Tova Community Health Inc
New York The Sickle Cell Thalasemia Patient Network
Queens Sickle Cell Associaton
Maryland Maryland Sickle Cell Disease Association Inc
Virginia Sickle Cell Association Inc
Virgin Islands Virgin Islands
SOUTHEAST REGION - Region 4
Alabama Central Alabama Chapter of the Sickle Cell Foundation
Sickle Cell Foundation of Greater Montgomery
Georgia Sickle Cell Foundation of Georgia
North Carolina Piedmont Health Service and Sickle Cell Agency
Community Health Interventions amp Sickle Cell
South Carolina James R Clark Memorial Sickle Cell Foundation
Tennesse The Sickle Cell Foundation of Tennessee
Association of Sickle Cell Lower Chattahoochie Regional Support Group
MIDWEST REGION - Region 5
Illinois Sickle Cell Disease Association of Illinois
Indiana Martin Center Sickle Cell Initiative
Michigan Sickle Cell Disease Association of America MI
Ohio Ohio Sickle Cell and Health Association Inc
HEARTLAND REGION - Region 7
Missouri St Louis Sickle Cell Association
PACIFIC NORTWEST RGION - Regions 9 and 10
California Childrens Sickle Cell Foundation
Cayenne Wellness
Nevada Childrens Specialty of Nevada
Oregon Sickle Cell Anemia Foundation of Oregon
Stay Informed
Get Connected
Embrace a Sickle Cell CUhRE (Community Uniting Health and Research Environments)
Working towards healthier lives for children and
adults with sickle cell
HRSA SICKLE CELL DISEASE NEWBORN SCREENING PROGRAM
Funding Opportunity Announcement HRSA-11-031
Awarded June 2015
Two-year project
Grant Goals
bull Create a national effort to develop implement and maintain a strategy to identify and assess the care quality and outcomes of individuals with sickle cell disease in order to improve access to comprehensive care
bull Increase the use of sickle cell educatorcounselors (eg community health workers) and
bull Increase the number of patients with care coordination follow-up and referral to medical homes for sickle cell patients
Grant Activities
bull Focus on selecting CBOs that are servicing the sickle cell community
bull Identify educate and train CHWs to locate children and adults with SCD
bull Connect children and adults to services if not connected
bull Enroll children and adults in Get Connected as a measurement of services provided and as a means to connect for future service provision
Grant Activities
bull Educate CHWs about hydroxyurea
bull Educate children and adults with SCD about hydroxyurea through CHWs directing consumers to CBO EducatorsCounselors and Medical Homes
bull Measure hydroxyurea awareness in Get Connected
bull 26 sites
bull 20 states
bull 5 HRSA regions
Development of GC IT Infrastructure
bull Global Visions Technologybull SCDAA
bull Development of patient enrollment formsndash Development of patient profiles
bull Development of system to aggregate data to insure de-identification
bull Focused on using established terminology and nomenclature ndash PhenX (consensus measures for phenotypes and exposures) AHRQ raceethnicity
The GC User Interface
bull Enrollment
bull Profile design and completion
bull Use ldquoprofilesrdquo to gather information to assess needs and shape future initiatives
User Name
Password
Log In
Forgot Password
copy 2014 Global Vision Technologies IncContact Global Vision Technologies Inc if you have problems or questions
Privacy Policy | Terms and Conditions
Join the Program
Welcome to the ldquoGet Connectedrdquo
Registry
Role of Community Health Workers
1 Find Patients
2 Enroll in Get
Connected
3 Educate
4 Make Referrals to
EducatorCounselors for CC
Early Results
36 Community Health Workers trained
3152 children and adults with sickle cell disease enrolled
What about all of these other registries
bull Collaborate donrsquot duplicate
bull Complement
bull Broaden stakeholder base
bull Launch new initiatives
Include common stakeholders
Use common data elements terminology definitions
Acknowledgements
bull HRSA ndash Dr Donnell Ivy Andrea Williamsbull National Institute for Healthcare Quality ndash Drs Suzette
Oyeku and Scott Bernsbull American College of Medical Genetics ndash Dr Amy
Browerbull National SCDAA HRSA Project
ndash Sonja L Banksndash Jennifer Fieldsndash Sonya Rossndash Ashley Costonndash Meghan Ringgoldndash Leroy Hughes Jr
NORTHEAST REGION - Regions 2 amp 3
Pennsylvania SCDAA - Philadelphia Delaware Chapter
Childrens Sickle Cell Foundation
South Central PA Sickle Cell Council
New Jersey Sickle Cell Association of New Jersey
Delaware Tova Community Health Inc
New York The Sickle Cell Thalasemia Patient Network
Queens Sickle Cell Associaton
Maryland Maryland Sickle Cell Disease Association Inc
Virginia Sickle Cell Association Inc
Virgin Islands Virgin Islands
SOUTHEAST REGION - Region 4
Alabama Central Alabama Chapter of the Sickle Cell Foundation
Sickle Cell Foundation of Greater Montgomery
Georgia Sickle Cell Foundation of Georgia
North Carolina Piedmont Health Service and Sickle Cell Agency
Community Health Interventions amp Sickle Cell
South Carolina James R Clark Memorial Sickle Cell Foundation
Tennesse The Sickle Cell Foundation of Tennessee
Association of Sickle Cell Lower Chattahoochie Regional Support Group
MIDWEST REGION - Region 5
Illinois Sickle Cell Disease Association of Illinois
Indiana Martin Center Sickle Cell Initiative
Michigan Sickle Cell Disease Association of America MI
Ohio Ohio Sickle Cell and Health Association Inc
HEARTLAND REGION - Region 7
Missouri St Louis Sickle Cell Association
PACIFIC NORTWEST RGION - Regions 9 and 10
California Childrens Sickle Cell Foundation
Cayenne Wellness
Nevada Childrens Specialty of Nevada
Oregon Sickle Cell Anemia Foundation of Oregon
Stay Informed
Get Connected
Embrace a Sickle Cell CUhRE (Community Uniting Health and Research Environments)
Working towards healthier lives for children and
adults with sickle cell
Grant Goals
bull Create a national effort to develop implement and maintain a strategy to identify and assess the care quality and outcomes of individuals with sickle cell disease in order to improve access to comprehensive care
bull Increase the use of sickle cell educatorcounselors (eg community health workers) and
bull Increase the number of patients with care coordination follow-up and referral to medical homes for sickle cell patients
Grant Activities
bull Focus on selecting CBOs that are servicing the sickle cell community
bull Identify educate and train CHWs to locate children and adults with SCD
bull Connect children and adults to services if not connected
bull Enroll children and adults in Get Connected as a measurement of services provided and as a means to connect for future service provision
Grant Activities
bull Educate CHWs about hydroxyurea
bull Educate children and adults with SCD about hydroxyurea through CHWs directing consumers to CBO EducatorsCounselors and Medical Homes
bull Measure hydroxyurea awareness in Get Connected
bull 26 sites
bull 20 states
bull 5 HRSA regions
Development of GC IT Infrastructure
bull Global Visions Technologybull SCDAA
bull Development of patient enrollment formsndash Development of patient profiles
bull Development of system to aggregate data to insure de-identification
bull Focused on using established terminology and nomenclature ndash PhenX (consensus measures for phenotypes and exposures) AHRQ raceethnicity
The GC User Interface
bull Enrollment
bull Profile design and completion
bull Use ldquoprofilesrdquo to gather information to assess needs and shape future initiatives
User Name
Password
Log In
Forgot Password
copy 2014 Global Vision Technologies IncContact Global Vision Technologies Inc if you have problems or questions
Privacy Policy | Terms and Conditions
Join the Program
Welcome to the ldquoGet Connectedrdquo
Registry
Role of Community Health Workers
1 Find Patients
2 Enroll in Get
Connected
3 Educate
4 Make Referrals to
EducatorCounselors for CC
Early Results
36 Community Health Workers trained
3152 children and adults with sickle cell disease enrolled
What about all of these other registries
bull Collaborate donrsquot duplicate
bull Complement
bull Broaden stakeholder base
bull Launch new initiatives
Include common stakeholders
Use common data elements terminology definitions
Acknowledgements
bull HRSA ndash Dr Donnell Ivy Andrea Williamsbull National Institute for Healthcare Quality ndash Drs Suzette
Oyeku and Scott Bernsbull American College of Medical Genetics ndash Dr Amy
Browerbull National SCDAA HRSA Project
ndash Sonja L Banksndash Jennifer Fieldsndash Sonya Rossndash Ashley Costonndash Meghan Ringgoldndash Leroy Hughes Jr
NORTHEAST REGION - Regions 2 amp 3
Pennsylvania SCDAA - Philadelphia Delaware Chapter
Childrens Sickle Cell Foundation
South Central PA Sickle Cell Council
New Jersey Sickle Cell Association of New Jersey
Delaware Tova Community Health Inc
New York The Sickle Cell Thalasemia Patient Network
Queens Sickle Cell Associaton
Maryland Maryland Sickle Cell Disease Association Inc
Virginia Sickle Cell Association Inc
Virgin Islands Virgin Islands
SOUTHEAST REGION - Region 4
Alabama Central Alabama Chapter of the Sickle Cell Foundation
Sickle Cell Foundation of Greater Montgomery
Georgia Sickle Cell Foundation of Georgia
North Carolina Piedmont Health Service and Sickle Cell Agency
Community Health Interventions amp Sickle Cell
South Carolina James R Clark Memorial Sickle Cell Foundation
Tennesse The Sickle Cell Foundation of Tennessee
Association of Sickle Cell Lower Chattahoochie Regional Support Group
MIDWEST REGION - Region 5
Illinois Sickle Cell Disease Association of Illinois
Indiana Martin Center Sickle Cell Initiative
Michigan Sickle Cell Disease Association of America MI
Ohio Ohio Sickle Cell and Health Association Inc
HEARTLAND REGION - Region 7
Missouri St Louis Sickle Cell Association
PACIFIC NORTWEST RGION - Regions 9 and 10
California Childrens Sickle Cell Foundation
Cayenne Wellness
Nevada Childrens Specialty of Nevada
Oregon Sickle Cell Anemia Foundation of Oregon
Stay Informed
Get Connected
Embrace a Sickle Cell CUhRE (Community Uniting Health and Research Environments)
Working towards healthier lives for children and
adults with sickle cell
Grant Activities
bull Focus on selecting CBOs that are servicing the sickle cell community
bull Identify educate and train CHWs to locate children and adults with SCD
bull Connect children and adults to services if not connected
bull Enroll children and adults in Get Connected as a measurement of services provided and as a means to connect for future service provision
Grant Activities
bull Educate CHWs about hydroxyurea
bull Educate children and adults with SCD about hydroxyurea through CHWs directing consumers to CBO EducatorsCounselors and Medical Homes
bull Measure hydroxyurea awareness in Get Connected
bull 26 sites
bull 20 states
bull 5 HRSA regions
Development of GC IT Infrastructure
bull Global Visions Technologybull SCDAA
bull Development of patient enrollment formsndash Development of patient profiles
bull Development of system to aggregate data to insure de-identification
bull Focused on using established terminology and nomenclature ndash PhenX (consensus measures for phenotypes and exposures) AHRQ raceethnicity
The GC User Interface
bull Enrollment
bull Profile design and completion
bull Use ldquoprofilesrdquo to gather information to assess needs and shape future initiatives
User Name
Password
Log In
Forgot Password
copy 2014 Global Vision Technologies IncContact Global Vision Technologies Inc if you have problems or questions
Privacy Policy | Terms and Conditions
Join the Program
Welcome to the ldquoGet Connectedrdquo
Registry
Role of Community Health Workers
1 Find Patients
2 Enroll in Get
Connected
3 Educate
4 Make Referrals to
EducatorCounselors for CC
Early Results
36 Community Health Workers trained
3152 children and adults with sickle cell disease enrolled
What about all of these other registries
bull Collaborate donrsquot duplicate
bull Complement
bull Broaden stakeholder base
bull Launch new initiatives
Include common stakeholders
Use common data elements terminology definitions
Acknowledgements
bull HRSA ndash Dr Donnell Ivy Andrea Williamsbull National Institute for Healthcare Quality ndash Drs Suzette
Oyeku and Scott Bernsbull American College of Medical Genetics ndash Dr Amy
Browerbull National SCDAA HRSA Project
ndash Sonja L Banksndash Jennifer Fieldsndash Sonya Rossndash Ashley Costonndash Meghan Ringgoldndash Leroy Hughes Jr
NORTHEAST REGION - Regions 2 amp 3
Pennsylvania SCDAA - Philadelphia Delaware Chapter
Childrens Sickle Cell Foundation
South Central PA Sickle Cell Council
New Jersey Sickle Cell Association of New Jersey
Delaware Tova Community Health Inc
New York The Sickle Cell Thalasemia Patient Network
Queens Sickle Cell Associaton
Maryland Maryland Sickle Cell Disease Association Inc
Virginia Sickle Cell Association Inc
Virgin Islands Virgin Islands
SOUTHEAST REGION - Region 4
Alabama Central Alabama Chapter of the Sickle Cell Foundation
Sickle Cell Foundation of Greater Montgomery
Georgia Sickle Cell Foundation of Georgia
North Carolina Piedmont Health Service and Sickle Cell Agency
Community Health Interventions amp Sickle Cell
South Carolina James R Clark Memorial Sickle Cell Foundation
Tennesse The Sickle Cell Foundation of Tennessee
Association of Sickle Cell Lower Chattahoochie Regional Support Group
MIDWEST REGION - Region 5
Illinois Sickle Cell Disease Association of Illinois
Indiana Martin Center Sickle Cell Initiative
Michigan Sickle Cell Disease Association of America MI
Ohio Ohio Sickle Cell and Health Association Inc
HEARTLAND REGION - Region 7
Missouri St Louis Sickle Cell Association
PACIFIC NORTWEST RGION - Regions 9 and 10
California Childrens Sickle Cell Foundation
Cayenne Wellness
Nevada Childrens Specialty of Nevada
Oregon Sickle Cell Anemia Foundation of Oregon
Stay Informed
Get Connected
Embrace a Sickle Cell CUhRE (Community Uniting Health and Research Environments)
Working towards healthier lives for children and
adults with sickle cell
Grant Activities
bull Educate CHWs about hydroxyurea
bull Educate children and adults with SCD about hydroxyurea through CHWs directing consumers to CBO EducatorsCounselors and Medical Homes
bull Measure hydroxyurea awareness in Get Connected
bull 26 sites
bull 20 states
bull 5 HRSA regions
Development of GC IT Infrastructure
bull Global Visions Technologybull SCDAA
bull Development of patient enrollment formsndash Development of patient profiles
bull Development of system to aggregate data to insure de-identification
bull Focused on using established terminology and nomenclature ndash PhenX (consensus measures for phenotypes and exposures) AHRQ raceethnicity
The GC User Interface
bull Enrollment
bull Profile design and completion
bull Use ldquoprofilesrdquo to gather information to assess needs and shape future initiatives
User Name
Password
Log In
Forgot Password
copy 2014 Global Vision Technologies IncContact Global Vision Technologies Inc if you have problems or questions
Privacy Policy | Terms and Conditions
Join the Program
Welcome to the ldquoGet Connectedrdquo
Registry
Role of Community Health Workers
1 Find Patients
2 Enroll in Get
Connected
3 Educate
4 Make Referrals to
EducatorCounselors for CC
Early Results
36 Community Health Workers trained
3152 children and adults with sickle cell disease enrolled
What about all of these other registries
bull Collaborate donrsquot duplicate
bull Complement
bull Broaden stakeholder base
bull Launch new initiatives
Include common stakeholders
Use common data elements terminology definitions
Acknowledgements
bull HRSA ndash Dr Donnell Ivy Andrea Williamsbull National Institute for Healthcare Quality ndash Drs Suzette
Oyeku and Scott Bernsbull American College of Medical Genetics ndash Dr Amy
Browerbull National SCDAA HRSA Project
ndash Sonja L Banksndash Jennifer Fieldsndash Sonya Rossndash Ashley Costonndash Meghan Ringgoldndash Leroy Hughes Jr
NORTHEAST REGION - Regions 2 amp 3
Pennsylvania SCDAA - Philadelphia Delaware Chapter
Childrens Sickle Cell Foundation
South Central PA Sickle Cell Council
New Jersey Sickle Cell Association of New Jersey
Delaware Tova Community Health Inc
New York The Sickle Cell Thalasemia Patient Network
Queens Sickle Cell Associaton
Maryland Maryland Sickle Cell Disease Association Inc
Virginia Sickle Cell Association Inc
Virgin Islands Virgin Islands
SOUTHEAST REGION - Region 4
Alabama Central Alabama Chapter of the Sickle Cell Foundation
Sickle Cell Foundation of Greater Montgomery
Georgia Sickle Cell Foundation of Georgia
North Carolina Piedmont Health Service and Sickle Cell Agency
Community Health Interventions amp Sickle Cell
South Carolina James R Clark Memorial Sickle Cell Foundation
Tennesse The Sickle Cell Foundation of Tennessee
Association of Sickle Cell Lower Chattahoochie Regional Support Group
MIDWEST REGION - Region 5
Illinois Sickle Cell Disease Association of Illinois
Indiana Martin Center Sickle Cell Initiative
Michigan Sickle Cell Disease Association of America MI
Ohio Ohio Sickle Cell and Health Association Inc
HEARTLAND REGION - Region 7
Missouri St Louis Sickle Cell Association
PACIFIC NORTWEST RGION - Regions 9 and 10
California Childrens Sickle Cell Foundation
Cayenne Wellness
Nevada Childrens Specialty of Nevada
Oregon Sickle Cell Anemia Foundation of Oregon
Stay Informed
Get Connected
Embrace a Sickle Cell CUhRE (Community Uniting Health and Research Environments)
Working towards healthier lives for children and
adults with sickle cell
bull 26 sites
bull 20 states
bull 5 HRSA regions
Development of GC IT Infrastructure
bull Global Visions Technologybull SCDAA
bull Development of patient enrollment formsndash Development of patient profiles
bull Development of system to aggregate data to insure de-identification
bull Focused on using established terminology and nomenclature ndash PhenX (consensus measures for phenotypes and exposures) AHRQ raceethnicity
The GC User Interface
bull Enrollment
bull Profile design and completion
bull Use ldquoprofilesrdquo to gather information to assess needs and shape future initiatives
User Name
Password
Log In
Forgot Password
copy 2014 Global Vision Technologies IncContact Global Vision Technologies Inc if you have problems or questions
Privacy Policy | Terms and Conditions
Join the Program
Welcome to the ldquoGet Connectedrdquo
Registry
Role of Community Health Workers
1 Find Patients
2 Enroll in Get
Connected
3 Educate
4 Make Referrals to
EducatorCounselors for CC
Early Results
36 Community Health Workers trained
3152 children and adults with sickle cell disease enrolled
What about all of these other registries
bull Collaborate donrsquot duplicate
bull Complement
bull Broaden stakeholder base
bull Launch new initiatives
Include common stakeholders
Use common data elements terminology definitions
Acknowledgements
bull HRSA ndash Dr Donnell Ivy Andrea Williamsbull National Institute for Healthcare Quality ndash Drs Suzette
Oyeku and Scott Bernsbull American College of Medical Genetics ndash Dr Amy
Browerbull National SCDAA HRSA Project
ndash Sonja L Banksndash Jennifer Fieldsndash Sonya Rossndash Ashley Costonndash Meghan Ringgoldndash Leroy Hughes Jr
NORTHEAST REGION - Regions 2 amp 3
Pennsylvania SCDAA - Philadelphia Delaware Chapter
Childrens Sickle Cell Foundation
South Central PA Sickle Cell Council
New Jersey Sickle Cell Association of New Jersey
Delaware Tova Community Health Inc
New York The Sickle Cell Thalasemia Patient Network
Queens Sickle Cell Associaton
Maryland Maryland Sickle Cell Disease Association Inc
Virginia Sickle Cell Association Inc
Virgin Islands Virgin Islands
SOUTHEAST REGION - Region 4
Alabama Central Alabama Chapter of the Sickle Cell Foundation
Sickle Cell Foundation of Greater Montgomery
Georgia Sickle Cell Foundation of Georgia
North Carolina Piedmont Health Service and Sickle Cell Agency
Community Health Interventions amp Sickle Cell
South Carolina James R Clark Memorial Sickle Cell Foundation
Tennesse The Sickle Cell Foundation of Tennessee
Association of Sickle Cell Lower Chattahoochie Regional Support Group
MIDWEST REGION - Region 5
Illinois Sickle Cell Disease Association of Illinois
Indiana Martin Center Sickle Cell Initiative
Michigan Sickle Cell Disease Association of America MI
Ohio Ohio Sickle Cell and Health Association Inc
HEARTLAND REGION - Region 7
Missouri St Louis Sickle Cell Association
PACIFIC NORTWEST RGION - Regions 9 and 10
California Childrens Sickle Cell Foundation
Cayenne Wellness
Nevada Childrens Specialty of Nevada
Oregon Sickle Cell Anemia Foundation of Oregon
Stay Informed
Get Connected
Embrace a Sickle Cell CUhRE (Community Uniting Health and Research Environments)
Working towards healthier lives for children and
adults with sickle cell
Development of GC IT Infrastructure
bull Global Visions Technologybull SCDAA
bull Development of patient enrollment formsndash Development of patient profiles
bull Development of system to aggregate data to insure de-identification
bull Focused on using established terminology and nomenclature ndash PhenX (consensus measures for phenotypes and exposures) AHRQ raceethnicity
The GC User Interface
bull Enrollment
bull Profile design and completion
bull Use ldquoprofilesrdquo to gather information to assess needs and shape future initiatives
User Name
Password
Log In
Forgot Password
copy 2014 Global Vision Technologies IncContact Global Vision Technologies Inc if you have problems or questions
Privacy Policy | Terms and Conditions
Join the Program
Welcome to the ldquoGet Connectedrdquo
Registry
Role of Community Health Workers
1 Find Patients
2 Enroll in Get
Connected
3 Educate
4 Make Referrals to
EducatorCounselors for CC
Early Results
36 Community Health Workers trained
3152 children and adults with sickle cell disease enrolled
What about all of these other registries
bull Collaborate donrsquot duplicate
bull Complement
bull Broaden stakeholder base
bull Launch new initiatives
Include common stakeholders
Use common data elements terminology definitions
Acknowledgements
bull HRSA ndash Dr Donnell Ivy Andrea Williamsbull National Institute for Healthcare Quality ndash Drs Suzette
Oyeku and Scott Bernsbull American College of Medical Genetics ndash Dr Amy
Browerbull National SCDAA HRSA Project
ndash Sonja L Banksndash Jennifer Fieldsndash Sonya Rossndash Ashley Costonndash Meghan Ringgoldndash Leroy Hughes Jr
NORTHEAST REGION - Regions 2 amp 3
Pennsylvania SCDAA - Philadelphia Delaware Chapter
Childrens Sickle Cell Foundation
South Central PA Sickle Cell Council
New Jersey Sickle Cell Association of New Jersey
Delaware Tova Community Health Inc
New York The Sickle Cell Thalasemia Patient Network
Queens Sickle Cell Associaton
Maryland Maryland Sickle Cell Disease Association Inc
Virginia Sickle Cell Association Inc
Virgin Islands Virgin Islands
SOUTHEAST REGION - Region 4
Alabama Central Alabama Chapter of the Sickle Cell Foundation
Sickle Cell Foundation of Greater Montgomery
Georgia Sickle Cell Foundation of Georgia
North Carolina Piedmont Health Service and Sickle Cell Agency
Community Health Interventions amp Sickle Cell
South Carolina James R Clark Memorial Sickle Cell Foundation
Tennesse The Sickle Cell Foundation of Tennessee
Association of Sickle Cell Lower Chattahoochie Regional Support Group
MIDWEST REGION - Region 5
Illinois Sickle Cell Disease Association of Illinois
Indiana Martin Center Sickle Cell Initiative
Michigan Sickle Cell Disease Association of America MI
Ohio Ohio Sickle Cell and Health Association Inc
HEARTLAND REGION - Region 7
Missouri St Louis Sickle Cell Association
PACIFIC NORTWEST RGION - Regions 9 and 10
California Childrens Sickle Cell Foundation
Cayenne Wellness
Nevada Childrens Specialty of Nevada
Oregon Sickle Cell Anemia Foundation of Oregon
Stay Informed
Get Connected
Embrace a Sickle Cell CUhRE (Community Uniting Health and Research Environments)
Working towards healthier lives for children and
adults with sickle cell
The GC User Interface
bull Enrollment
bull Profile design and completion
bull Use ldquoprofilesrdquo to gather information to assess needs and shape future initiatives
User Name
Password
Log In
Forgot Password
copy 2014 Global Vision Technologies IncContact Global Vision Technologies Inc if you have problems or questions
Privacy Policy | Terms and Conditions
Join the Program
Welcome to the ldquoGet Connectedrdquo
Registry
Role of Community Health Workers
1 Find Patients
2 Enroll in Get
Connected
3 Educate
4 Make Referrals to
EducatorCounselors for CC
Early Results
36 Community Health Workers trained
3152 children and adults with sickle cell disease enrolled
What about all of these other registries
bull Collaborate donrsquot duplicate
bull Complement
bull Broaden stakeholder base
bull Launch new initiatives
Include common stakeholders
Use common data elements terminology definitions
Acknowledgements
bull HRSA ndash Dr Donnell Ivy Andrea Williamsbull National Institute for Healthcare Quality ndash Drs Suzette
Oyeku and Scott Bernsbull American College of Medical Genetics ndash Dr Amy
Browerbull National SCDAA HRSA Project
ndash Sonja L Banksndash Jennifer Fieldsndash Sonya Rossndash Ashley Costonndash Meghan Ringgoldndash Leroy Hughes Jr
NORTHEAST REGION - Regions 2 amp 3
Pennsylvania SCDAA - Philadelphia Delaware Chapter
Childrens Sickle Cell Foundation
South Central PA Sickle Cell Council
New Jersey Sickle Cell Association of New Jersey
Delaware Tova Community Health Inc
New York The Sickle Cell Thalasemia Patient Network
Queens Sickle Cell Associaton
Maryland Maryland Sickle Cell Disease Association Inc
Virginia Sickle Cell Association Inc
Virgin Islands Virgin Islands
SOUTHEAST REGION - Region 4
Alabama Central Alabama Chapter of the Sickle Cell Foundation
Sickle Cell Foundation of Greater Montgomery
Georgia Sickle Cell Foundation of Georgia
North Carolina Piedmont Health Service and Sickle Cell Agency
Community Health Interventions amp Sickle Cell
South Carolina James R Clark Memorial Sickle Cell Foundation
Tennesse The Sickle Cell Foundation of Tennessee
Association of Sickle Cell Lower Chattahoochie Regional Support Group
MIDWEST REGION - Region 5
Illinois Sickle Cell Disease Association of Illinois
Indiana Martin Center Sickle Cell Initiative
Michigan Sickle Cell Disease Association of America MI
Ohio Ohio Sickle Cell and Health Association Inc
HEARTLAND REGION - Region 7
Missouri St Louis Sickle Cell Association
PACIFIC NORTWEST RGION - Regions 9 and 10
California Childrens Sickle Cell Foundation
Cayenne Wellness
Nevada Childrens Specialty of Nevada
Oregon Sickle Cell Anemia Foundation of Oregon
Stay Informed
Get Connected
Embrace a Sickle Cell CUhRE (Community Uniting Health and Research Environments)
Working towards healthier lives for children and
adults with sickle cell
User Name
Password
Log In
Forgot Password
copy 2014 Global Vision Technologies IncContact Global Vision Technologies Inc if you have problems or questions
Privacy Policy | Terms and Conditions
Join the Program
Welcome to the ldquoGet Connectedrdquo
Registry
Role of Community Health Workers
1 Find Patients
2 Enroll in Get
Connected
3 Educate
4 Make Referrals to
EducatorCounselors for CC
Early Results
36 Community Health Workers trained
3152 children and adults with sickle cell disease enrolled
What about all of these other registries
bull Collaborate donrsquot duplicate
bull Complement
bull Broaden stakeholder base
bull Launch new initiatives
Include common stakeholders
Use common data elements terminology definitions
Acknowledgements
bull HRSA ndash Dr Donnell Ivy Andrea Williamsbull National Institute for Healthcare Quality ndash Drs Suzette
Oyeku and Scott Bernsbull American College of Medical Genetics ndash Dr Amy
Browerbull National SCDAA HRSA Project
ndash Sonja L Banksndash Jennifer Fieldsndash Sonya Rossndash Ashley Costonndash Meghan Ringgoldndash Leroy Hughes Jr
NORTHEAST REGION - Regions 2 amp 3
Pennsylvania SCDAA - Philadelphia Delaware Chapter
Childrens Sickle Cell Foundation
South Central PA Sickle Cell Council
New Jersey Sickle Cell Association of New Jersey
Delaware Tova Community Health Inc
New York The Sickle Cell Thalasemia Patient Network
Queens Sickle Cell Associaton
Maryland Maryland Sickle Cell Disease Association Inc
Virginia Sickle Cell Association Inc
Virgin Islands Virgin Islands
SOUTHEAST REGION - Region 4
Alabama Central Alabama Chapter of the Sickle Cell Foundation
Sickle Cell Foundation of Greater Montgomery
Georgia Sickle Cell Foundation of Georgia
North Carolina Piedmont Health Service and Sickle Cell Agency
Community Health Interventions amp Sickle Cell
South Carolina James R Clark Memorial Sickle Cell Foundation
Tennesse The Sickle Cell Foundation of Tennessee
Association of Sickle Cell Lower Chattahoochie Regional Support Group
MIDWEST REGION - Region 5
Illinois Sickle Cell Disease Association of Illinois
Indiana Martin Center Sickle Cell Initiative
Michigan Sickle Cell Disease Association of America MI
Ohio Ohio Sickle Cell and Health Association Inc
HEARTLAND REGION - Region 7
Missouri St Louis Sickle Cell Association
PACIFIC NORTWEST RGION - Regions 9 and 10
California Childrens Sickle Cell Foundation
Cayenne Wellness
Nevada Childrens Specialty of Nevada
Oregon Sickle Cell Anemia Foundation of Oregon
Stay Informed
Get Connected
Embrace a Sickle Cell CUhRE (Community Uniting Health and Research Environments)
Working towards healthier lives for children and
adults with sickle cell
Role of Community Health Workers
1 Find Patients
2 Enroll in Get
Connected
3 Educate
4 Make Referrals to
EducatorCounselors for CC
Early Results
36 Community Health Workers trained
3152 children and adults with sickle cell disease enrolled
What about all of these other registries
bull Collaborate donrsquot duplicate
bull Complement
bull Broaden stakeholder base
bull Launch new initiatives
Include common stakeholders
Use common data elements terminology definitions
Acknowledgements
bull HRSA ndash Dr Donnell Ivy Andrea Williamsbull National Institute for Healthcare Quality ndash Drs Suzette
Oyeku and Scott Bernsbull American College of Medical Genetics ndash Dr Amy
Browerbull National SCDAA HRSA Project
ndash Sonja L Banksndash Jennifer Fieldsndash Sonya Rossndash Ashley Costonndash Meghan Ringgoldndash Leroy Hughes Jr
NORTHEAST REGION - Regions 2 amp 3
Pennsylvania SCDAA - Philadelphia Delaware Chapter
Childrens Sickle Cell Foundation
South Central PA Sickle Cell Council
New Jersey Sickle Cell Association of New Jersey
Delaware Tova Community Health Inc
New York The Sickle Cell Thalasemia Patient Network
Queens Sickle Cell Associaton
Maryland Maryland Sickle Cell Disease Association Inc
Virginia Sickle Cell Association Inc
Virgin Islands Virgin Islands
SOUTHEAST REGION - Region 4
Alabama Central Alabama Chapter of the Sickle Cell Foundation
Sickle Cell Foundation of Greater Montgomery
Georgia Sickle Cell Foundation of Georgia
North Carolina Piedmont Health Service and Sickle Cell Agency
Community Health Interventions amp Sickle Cell
South Carolina James R Clark Memorial Sickle Cell Foundation
Tennesse The Sickle Cell Foundation of Tennessee
Association of Sickle Cell Lower Chattahoochie Regional Support Group
MIDWEST REGION - Region 5
Illinois Sickle Cell Disease Association of Illinois
Indiana Martin Center Sickle Cell Initiative
Michigan Sickle Cell Disease Association of America MI
Ohio Ohio Sickle Cell and Health Association Inc
HEARTLAND REGION - Region 7
Missouri St Louis Sickle Cell Association
PACIFIC NORTWEST RGION - Regions 9 and 10
California Childrens Sickle Cell Foundation
Cayenne Wellness
Nevada Childrens Specialty of Nevada
Oregon Sickle Cell Anemia Foundation of Oregon
Stay Informed
Get Connected
Embrace a Sickle Cell CUhRE (Community Uniting Health and Research Environments)
Working towards healthier lives for children and
adults with sickle cell
Early Results
36 Community Health Workers trained
3152 children and adults with sickle cell disease enrolled
What about all of these other registries
bull Collaborate donrsquot duplicate
bull Complement
bull Broaden stakeholder base
bull Launch new initiatives
Include common stakeholders
Use common data elements terminology definitions
Acknowledgements
bull HRSA ndash Dr Donnell Ivy Andrea Williamsbull National Institute for Healthcare Quality ndash Drs Suzette
Oyeku and Scott Bernsbull American College of Medical Genetics ndash Dr Amy
Browerbull National SCDAA HRSA Project
ndash Sonja L Banksndash Jennifer Fieldsndash Sonya Rossndash Ashley Costonndash Meghan Ringgoldndash Leroy Hughes Jr
NORTHEAST REGION - Regions 2 amp 3
Pennsylvania SCDAA - Philadelphia Delaware Chapter
Childrens Sickle Cell Foundation
South Central PA Sickle Cell Council
New Jersey Sickle Cell Association of New Jersey
Delaware Tova Community Health Inc
New York The Sickle Cell Thalasemia Patient Network
Queens Sickle Cell Associaton
Maryland Maryland Sickle Cell Disease Association Inc
Virginia Sickle Cell Association Inc
Virgin Islands Virgin Islands
SOUTHEAST REGION - Region 4
Alabama Central Alabama Chapter of the Sickle Cell Foundation
Sickle Cell Foundation of Greater Montgomery
Georgia Sickle Cell Foundation of Georgia
North Carolina Piedmont Health Service and Sickle Cell Agency
Community Health Interventions amp Sickle Cell
South Carolina James R Clark Memorial Sickle Cell Foundation
Tennesse The Sickle Cell Foundation of Tennessee
Association of Sickle Cell Lower Chattahoochie Regional Support Group
MIDWEST REGION - Region 5
Illinois Sickle Cell Disease Association of Illinois
Indiana Martin Center Sickle Cell Initiative
Michigan Sickle Cell Disease Association of America MI
Ohio Ohio Sickle Cell and Health Association Inc
HEARTLAND REGION - Region 7
Missouri St Louis Sickle Cell Association
PACIFIC NORTWEST RGION - Regions 9 and 10
California Childrens Sickle Cell Foundation
Cayenne Wellness
Nevada Childrens Specialty of Nevada
Oregon Sickle Cell Anemia Foundation of Oregon
Stay Informed
Get Connected
Embrace a Sickle Cell CUhRE (Community Uniting Health and Research Environments)
Working towards healthier lives for children and
adults with sickle cell
What about all of these other registries
bull Collaborate donrsquot duplicate
bull Complement
bull Broaden stakeholder base
bull Launch new initiatives
Include common stakeholders
Use common data elements terminology definitions
Acknowledgements
bull HRSA ndash Dr Donnell Ivy Andrea Williamsbull National Institute for Healthcare Quality ndash Drs Suzette
Oyeku and Scott Bernsbull American College of Medical Genetics ndash Dr Amy
Browerbull National SCDAA HRSA Project
ndash Sonja L Banksndash Jennifer Fieldsndash Sonya Rossndash Ashley Costonndash Meghan Ringgoldndash Leroy Hughes Jr
NORTHEAST REGION - Regions 2 amp 3
Pennsylvania SCDAA - Philadelphia Delaware Chapter
Childrens Sickle Cell Foundation
South Central PA Sickle Cell Council
New Jersey Sickle Cell Association of New Jersey
Delaware Tova Community Health Inc
New York The Sickle Cell Thalasemia Patient Network
Queens Sickle Cell Associaton
Maryland Maryland Sickle Cell Disease Association Inc
Virginia Sickle Cell Association Inc
Virgin Islands Virgin Islands
SOUTHEAST REGION - Region 4
Alabama Central Alabama Chapter of the Sickle Cell Foundation
Sickle Cell Foundation of Greater Montgomery
Georgia Sickle Cell Foundation of Georgia
North Carolina Piedmont Health Service and Sickle Cell Agency
Community Health Interventions amp Sickle Cell
South Carolina James R Clark Memorial Sickle Cell Foundation
Tennesse The Sickle Cell Foundation of Tennessee
Association of Sickle Cell Lower Chattahoochie Regional Support Group
MIDWEST REGION - Region 5
Illinois Sickle Cell Disease Association of Illinois
Indiana Martin Center Sickle Cell Initiative
Michigan Sickle Cell Disease Association of America MI
Ohio Ohio Sickle Cell and Health Association Inc
HEARTLAND REGION - Region 7
Missouri St Louis Sickle Cell Association
PACIFIC NORTWEST RGION - Regions 9 and 10
California Childrens Sickle Cell Foundation
Cayenne Wellness
Nevada Childrens Specialty of Nevada
Oregon Sickle Cell Anemia Foundation of Oregon
Stay Informed
Get Connected
Embrace a Sickle Cell CUhRE (Community Uniting Health and Research Environments)
Working towards healthier lives for children and
adults with sickle cell
Acknowledgements
bull HRSA ndash Dr Donnell Ivy Andrea Williamsbull National Institute for Healthcare Quality ndash Drs Suzette
Oyeku and Scott Bernsbull American College of Medical Genetics ndash Dr Amy
Browerbull National SCDAA HRSA Project
ndash Sonja L Banksndash Jennifer Fieldsndash Sonya Rossndash Ashley Costonndash Meghan Ringgoldndash Leroy Hughes Jr
NORTHEAST REGION - Regions 2 amp 3
Pennsylvania SCDAA - Philadelphia Delaware Chapter
Childrens Sickle Cell Foundation
South Central PA Sickle Cell Council
New Jersey Sickle Cell Association of New Jersey
Delaware Tova Community Health Inc
New York The Sickle Cell Thalasemia Patient Network
Queens Sickle Cell Associaton
Maryland Maryland Sickle Cell Disease Association Inc
Virginia Sickle Cell Association Inc
Virgin Islands Virgin Islands
SOUTHEAST REGION - Region 4
Alabama Central Alabama Chapter of the Sickle Cell Foundation
Sickle Cell Foundation of Greater Montgomery
Georgia Sickle Cell Foundation of Georgia
North Carolina Piedmont Health Service and Sickle Cell Agency
Community Health Interventions amp Sickle Cell
South Carolina James R Clark Memorial Sickle Cell Foundation
Tennesse The Sickle Cell Foundation of Tennessee
Association of Sickle Cell Lower Chattahoochie Regional Support Group
MIDWEST REGION - Region 5
Illinois Sickle Cell Disease Association of Illinois
Indiana Martin Center Sickle Cell Initiative
Michigan Sickle Cell Disease Association of America MI
Ohio Ohio Sickle Cell and Health Association Inc
HEARTLAND REGION - Region 7
Missouri St Louis Sickle Cell Association
PACIFIC NORTWEST RGION - Regions 9 and 10
California Childrens Sickle Cell Foundation
Cayenne Wellness
Nevada Childrens Specialty of Nevada
Oregon Sickle Cell Anemia Foundation of Oregon
Stay Informed
Get Connected
Embrace a Sickle Cell CUhRE (Community Uniting Health and Research Environments)
Working towards healthier lives for children and
adults with sickle cell
NORTHEAST REGION - Regions 2 amp 3
Pennsylvania SCDAA - Philadelphia Delaware Chapter
Childrens Sickle Cell Foundation
South Central PA Sickle Cell Council
New Jersey Sickle Cell Association of New Jersey
Delaware Tova Community Health Inc
New York The Sickle Cell Thalasemia Patient Network
Queens Sickle Cell Associaton
Maryland Maryland Sickle Cell Disease Association Inc
Virginia Sickle Cell Association Inc
Virgin Islands Virgin Islands
SOUTHEAST REGION - Region 4
Alabama Central Alabama Chapter of the Sickle Cell Foundation
Sickle Cell Foundation of Greater Montgomery
Georgia Sickle Cell Foundation of Georgia
North Carolina Piedmont Health Service and Sickle Cell Agency
Community Health Interventions amp Sickle Cell
South Carolina James R Clark Memorial Sickle Cell Foundation
Tennesse The Sickle Cell Foundation of Tennessee
Association of Sickle Cell Lower Chattahoochie Regional Support Group
MIDWEST REGION - Region 5
Illinois Sickle Cell Disease Association of Illinois
Indiana Martin Center Sickle Cell Initiative
Michigan Sickle Cell Disease Association of America MI
Ohio Ohio Sickle Cell and Health Association Inc
HEARTLAND REGION - Region 7
Missouri St Louis Sickle Cell Association
PACIFIC NORTWEST RGION - Regions 9 and 10
California Childrens Sickle Cell Foundation
Cayenne Wellness
Nevada Childrens Specialty of Nevada
Oregon Sickle Cell Anemia Foundation of Oregon
Stay Informed
Get Connected
Embrace a Sickle Cell CUhRE (Community Uniting Health and Research Environments)
Working towards healthier lives for children and
adults with sickle cell
Stay Informed
Get Connected
Embrace a Sickle Cell CUhRE (Community Uniting Health and Research Environments)
Working towards healthier lives for children and
adults with sickle cell
Working towards healthier lives for children and
adults with sickle cell
top related