Regional Genetics Collaboratives: A Hidden EHDI Resource
Penny Hatcher, MSN, DrPH
Nancy Vanderburg, BSN, PHN
Minnesota Department of Health
St. Paul, Minnesota
2/6/062
Faculty Disclosure Information
In the past 12 months, I/we have not had a significant financial interest or other relationship with the manufacturer(s) of the product(s) or provider(s) of the service(s) that will be discussed in my presentation.
This presentation will not include discussion of pharmaceuticals or devices that have not been approved by the FDA or if you will be discussing unapproved or "off-label" uses of pharmaceuticals or devices.
2/6/063
Outline
1. National Regional Genetic Collaboratives2. Goal of Region 4 Collaborative (Minnesota)3. Minnesota’s Integrated Newborn Screening
Model 4. Region 4 Mini-grants That Impact EHDI5. Why Collaboratives are a Hidden EHDI
Resource6. What EHDI Programs Can Do to ‘Tap’
Collaboratives
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HRSA Regional Genetics & Newborn Screening Collaboratives
Seven (7) Collaboratives in the U.S.Supported by the DHHS/Health
Resources and Services Administration, Maternal and Child Health Bureau, Genetic Services Branch.
June 2004 – May 2007
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HRSA Regional Genetics & Newborn Screening Collaboratives
Mountain
Western
Heartland
Southeastern
New York/Mid-Atlantic
New England
“Region 4”
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National Newborn Screening & Genetics Resource Center
http://www.genes-r-us.uthscsa.edu/resources/genetics
Illinois *Michigan WisconsinIndiana MinnesotaKentucky Ohio
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Goal of Region 4 Collaboratives
Provides a forum for the 7 states to share the use of available newborn screening and genetic resources
Improved geographic distribution of genetics expertise throughout the region
Decrease each state’s need to “reinvent the wheel.”
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2/6/069
MN Integrated Newborn Screening (NBS) Model
Currently…– Blood spot– Hearing– Vital Statistics (birth, death)– Birth Defects Information System (BDIS)
Future– Immunizations
2/6/0610
MN Medical Management Provider Communication System
QuickPlace– HIPAA compliant, web-based communication
platform between blood spot partners– Secure electronic communication between the
MN Department of Health, Mayo Clinic, and the University of MN Medical Center
Enhances screening and diagnostic evaluation of infants.
2/6/0611
MN Region 4 Genetics Projects
Developing practice models for tracking– Hearing, blood spot, birth defects
Short- & long-term follow-upEvaluation of short-term follow-up
– E.g., Follow-up form (handout)
Enhance genetic services
2/6/0612
Region 4 Workgroup Mini-Grants $$
Four (4) Mini-Grants Awarded1. Professional Education 2. Access to Genetic Services3. Community Collaboration & Family
Support4. Long-term follow Up & Clinical
Outcomes(Sept 2005 – May 2006; 9 months)
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1. Professional Education Mini-Grant
$15,000Develop web-based pre-natal provider
newborn screening (blood spot, hearing) educational materials
Assess current parent materials, i.e. literacy level, parent input, accuracy– Louisiana State University materials
2/6/0614
2. Access to Genetic Services Mini-Grant
$15,000Assess barriers to accessing genetic services
(blood spot, hearing, birth defects, etc.)– Review past state surveys & needs assessments
Identify feasibility of new service delivery & reimbursement practices– or other best practices to improve deliver of genetic
services.
2/6/0615
3. Community Collaboration & Family Support Mini-Grant
$5,000 Identify parent information and support models
in each of the seven statese.g., WI “Guide-by-your side,” MN Parent Mentor, etc
Recommend best practices addressing information and support regarding:– Child’s specific disorder– State-wide and interstate support systems– How parents can access information/resources in their
own community
2/6/0616
4. Long-Term F/U & Clinical Outcomes Mini-Grant
$6,034Convene an expert group of metabolic clinicians
from each state to facilitate the development of the registry through a one day face-to-face meeting.
Development of a research disease registry for one condition identified through newborn screening [MCADD] – Further the development of clinical best practice
models.
2/6/0617
Hidden Resources
Funds $$Cross-collaboration
• Internal• External (public, private, state, national)
Technical Assistance/ConsultationSharing Expertise & Practice Models
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What Can You (EHDI) Do?
1. Go to NNBSGRC website
2. Identify Regional Genetics Coordinator(s)
a. Meet with Coordinator and/or workgroups
3. Review Your Region’s Grant Abstract
4. Become a Partner
2/6/0619
Contact Information
Penny HatcherMinnesota Department of Health (MDH), EHDI Project [email protected]
Nancy VanderburgMDH, Region 4 Genetic Collaborative, State Lead (MN)[email protected]
www.health.state.mn.us
