dr. goldie s. byrd, dr. rosalyn lang,minoritymenshealthinitiative.hamptonu.edu/media/... ·...
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Dr. Goldie S. Byrd, Dean
Dr. Rosalyn Lang, Research Assistant Professor
College of Arts and Sciences
North Carolina A&T State University
What We Will Discuss
African American Alzheimer’s Disease Research Study as a Model
Alzheimer’s Facts and Figures
4 Research Studies that inform Healthy Lifestyles:• Genetic Research Study
• Survey I
• Survey II
• Survey III
Creation of Merck Center
AD Support Group
Charlotte Gala
African American Alzheimer’s Disease Research Study
Our Study Model
Consider AD as normal
memory loss
More confident in future
advances in AD research
Lower literacy skills
Twice as likely to have AD
compared to whites
Have less factual
information
Fewer information sources
about the disease
Lower levels of perceived
risk of AD
Why Study Alzheimer’s in African Americans?
Improve outreach and knowledge base and recruitment
strategy
Recruit 2000 African Americans
Test the association of AD with human Genome
Refine the phenotype of AD among AA
Seek molecular targets for potential therapeutics
AAAD Study Aims
60% of Caregivers are Women
Finances are Affected
Work is Affected
Health is Affected
Family Relationships Strained
There are over 15 million Unpaid Caregivers
According to the Alzheimer’s Association…
There is no CURE for Alzheimer’s Disease
Alzheimer’s Disease Challenge
LanguageMemory
Intelligence, judgment and behavior
Alzheimer’s Disease
Affected Areas of the Brain
Know the Warning Signs of Alzheimer’s Disease
Take the Time to…
Nursing homes can cost up to $70,000 per year
Families are often left broken:• Financially
• Socially
• Mentally
• Physically
Impact of Alzheimer’s on Family and Health
Removing Barriers to Minority Participation in Health Related
Research Studies
AAAD Key Goal
AAAD
(NC A&T State University,
University of Miami, Vanderbilt,
Columbia)
Genetics
AD Literacy
Outreach
AAAD Model
Translational (Bench to Bedside)
Study Protocol
Community Outreach
Senior Living Facilities
ChurchesCommunity/Civic
ActivitiesAdvertisements
Radio/NewspaperElectronic Media
Physiological Studies
Cognitive Assessments
MRI (250 Subset)
Recruitment
NC RAD
DNA Extraction
Cell Lines
Genome-Wide Association
Potential Therapeutics
Community Outreach, Literacy
Awareness and Policy
Blood Draws
(40 cc’s)
Study Protocol
Correspondence
TREM2 and Neurodegenerative
Disease;N Engl J Med 2013;
369:1564-1570
Christiane Reitz, M.D., Ph.D., Richard Mayeux,
M.D. for the Alzheimer's Disease Genetics
Consortium
In the VEGAS analyses, the TREM2 gene was associated
with Alzheimer's disease (P<0.001). Finally, in VEGAS
analyses that were restricted to the largest individual data
set (907 cases and 1675 controls), the TREM gene remained
significantly associated with Alzheimer's disease (P=0.04).
This genetic study of Alzheimer's disease in blacks provides
support for a role of TREM2 in Alzheimer's disease.
Genetic Research
ORIGINAL CONTRIBUTION
Variants in the ATP-Binding Cassette Transporter (ABCA7), Apolipoprotein E 4, and the Risk of Late-Onset Alzheimer Disease
in African Americans.
JAMA2013;309(14):1483-1492 www.jama.com
In this meta-analysis of data from African
American participants, Alzheimer disease was significantly associated with variants in ABCA7 and with other genes that have been associated with Alzheimer disease in individuals of European ancestry.
Genetic Research:
Recent Results
ORIGINAL CONTRIBUTION
Repeat expansions in the C9ORF72 gene contribute to Alzheimer's
disease in Caucasians
Neurobiology Aging (2013) May;34(5):1519.e5-12
Expansions in the C90RF72 gene have been found in Caucasian families with Frontal Temporal Dementia. In this genetic analysis of gene region C90RF72, large repeats were seen in 0.75% of Caucasian samples with AD. No large repeats were seen in control samples or in African American samples.
Genetic Research:
Recent Results
ORIGINAL COMMUNICATION
Recruiting Intergenerational African
American Males for Biomedical Research
Studies: A Major Research Challenge
Goldie S. Byrd, PhD; Christopher L. Edwards, PhD;
Vinaya A. Kelkar, Ph.D; Ruth G. Phillips, MD;Jennifer
R. Byrd, BS; Dora Som Pim-Pong, MS; Takiyah D.
Starks, MS; Ashleigh L. Taylor, MS; Raechel E.
Mckinley; Yi-Ju Li; Margaret Pericak-Vance, PhD. J
Natl Med Assoc. 2011;103:480-487
In order to close health disparities gaps for African
American males, there is a great need to assist African
American males in understanding underlying reasons
and expectations for their participation. It is clear that
most are willing to participate, but based on this study,
there are important motivators that would
encourage their participation.
Survey I: African Americans & Research ParticipationAfrican American Males
Previous Research
Participation16%
No Previous Research
Participation84%
Research Experience of Total Participants shown by Percentage
*Source: R. Lang et al. Accepted for publication 2013
Survey I: African Americans & Research Participation
African American participation in health-related research studies: indicators for effective recruitment.
Lang R, Kelkar VA, Edwards CL, Pericak-Vance, M. Byrd J, Byrd GS.(2013); Journal of Public Health Management and Practice. 19(2):110-8
African Americans are willing to
participate in Health related Research
studies. Community engagement that
fosters relationship building and that
limit barriers are necessary to
improve African American
participation .
Survey I: African Americans & Research ParticipationRecent Results
ObjectiveDetermine African Americans’ understanding, perceptions, and behaviors regarding memory loss or Alzheimer’s disease
PurposeAssess perception and specific knowledge of warning signs, symptoms, and treatment options associated with AD
Survey II: Alzheimer’s Disease Literacy in the African American Community
Merck Supported Center for Outreach in Alzheimer’s, Aging and Community
Health (COAACH)
Memory Walks
Advocacy
Student Projects
National Campaign
Support Group
Caregivers Conference
Research Participation
Educational Forum
University/Community Partnerships -- alumni
Community Engagement
Healthy Lifestyle
• AD takes a huge physical and emotionaltoll.
• Caregivers must deal with changes in a loved one’s personality and provide constant attention for years.
• Care givers are especially vulnerable to physical and emotional stress.
• Peer support programs can help link caregivers with trained volunteers.
• Other support programs can offer services geared to caregivers dealing with different stages of AD.
Support for Caregivers
Mental Health
Physical Health
Family Finances
Support Groups
Adult Day Care
15.2 million unpaid
caregivers in US
Support for Caregivers
Annual Caregivers’ Conference
Greensboro, NC Caregivers Conference
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2013 Caregiver Conference
Keeping Memories Alive Project
To significantly increase awareness and participatory action
in Alzheimer’s disease, among diverse populations
Hispanics are 1.5 times more likely to have Alzheimer's’ and African Americans are 2 times more likely to have it than Whites, according to the 2010 Alzheimer’s Association’s Facts and Figures.
Keeping Memories Alive ProjectGoal
Improve education and awareness with grassroots efforts and
multiple media outlets
Improve motivation of individuals to take tangible and
participatory action against Alzheimer’s disease
Improve individuals’ overall motivation to adopt healthy
lifestyles and prevent Alzheimer’s disease
Keeping Memories Alive ProjectSpecific Objectives
Keeping Memories Alive ProjectEducational Forum and Gala
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Above: NCCU Maestro Travis Alexander, American Idol Mr. Ruben Studdard and Anjelica McRae
Below: Sandra Hughes (former WFMY TV anchor), Dr. Goldie Byrd and State Senator Gladys Robinson
Professor Saundra Hughes, Senator Gladys Robinson
Keeping Memories Alive Project2012 Charlotte Educational Forum and Gala
“I Know It’s You” Alzheimer’s SongAlvin Garrett and Ruben Studdard
Launch Spring 2014
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Community Engaged Research
African American Participation in Health Related Research Studies
Community Outreach, Education, Advocacy and Awareness
Center for Outreach in Alzheimer’s, Aging, and Community Health
What illnesses are affecting your community?
…for Building Healthy Partnerships
that Support Healthy Living
5 Strategies…
Identify Your Goals: What are Your Needs?
Strategy 1
Enlist leadership that is invested in your goals
Strategy 2
Do your research before forming meaningful partnerships
Strategy 3
Form meaningful partnerships
According to Cook et al. (2012) Promoting community engaged or initiated research requires flexible funding mechanisms and efforts that are relevant to the work of community partners.
Cook, W.K., Weir, R.C., Ro, M., Ko, K.L., Panapasa, S., Bautista, R. … Islam, N. (2012). Improving Asian American, Native Hawaiian, and Pacific Islander health: National organizations leading community research initiatives. Progress in Community Health Partnerships: Research, Education, and Action, 6(1), 33-41.
Strategy 4
Know Your Roles and Responsibilities
Strategy 5
EXPANDING COLLABORATIONS TO IMPROVE EDUCATION, PARTICIPATION and ADVOCACY
Form Strategic Relationships with Faith-Based Organizations
Improve Health Literacy through Education and Awareness
Inspire African Americans to take Preventative Action
Increase Strategic Partnerships with Health Care Providers
Engage the College of Arts and Sciences in Solving Health Challenges
Future of AAAD Research Study
Mission: To create a multi-disciplinary Center for Outreach that seeks to reduce the prevalence of Alzheimer’s disease and improve healthy aging
among the elderly in vulnerable populations.
$1 million Merck Center for Outreach in Alzheimer’s, Aging and Community Health
(December 31, 2012)
www.ncat.edu | Explore. Discover. Become.
Merck COAACH Initiative
CORE 1: Community Outreach and Education
CORE 2: Intervention and Support
CORE 3: Formal Education and Training in Gerontology
CORE 4: Organization, Assessment and Accountability
Merck COAACH Initiative
Major Areas
Alzheimer’s Disease Advocacy
The Plan establishes five ambitious goals to both prevent future cases of Alzheimer's disease and to better meet the needs of the millions of
American families currently facing this disease.
Prevent and Effectively Treat Alzheimer's Disease by 2025.
Optimize Care Quality and Efficiency.
Expand Supports for People with Alzheimer's Disease and Their Families.
Enhance Public Awareness and Engagement.
Track Progress and Drive Improvement.
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National Alzheimer’s PlanRevised May 2012
Last night House and Senate negotiators unveiled an "omnibus" bill that included $122 million in additional Alzheimer’s funding, the largest-ever increase in federal funding for Alzheimer's research and care programs. This is a significant step forward in the fight against this devastating disease, and members of the research community — like YOU — helped make it happen! By helping to select and review grant proposals, you are working to advance the studies that will bring us closer to methods of treatment, prevention and, ultimately, a cure.
Increasing the federal government's commitment to funding Alzheimer's initiatives has long been a top priority for the Alzheimer's Association. As the world’s leading voluntary health organization in Alzheimer’s care, support and research, the Association appreciates your dedication to ending the burden of Alzheimer’s.
While we’ve come a long way, there’s still so much more to be done. As an important member of our research community, we hope you’ll continue to join us as we pursue our vision of a world without Alzheimer’s disease.
facebook/LinkedIn: Congress has put forth the largest proposed increase in federal funding for Alzheimer's research and care programs. Thanks to bipartisan budget negotiators for coming together on this issue. Let's all encourage swift passage by the both the House and the Senate. #ENDALZ January 14, 2014
Twitter: Congress has proposed the largest increase in federal $ for Alzheimer's research/care! Let's encourage swift passage by House/Senate #ENDALZ
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Federal Update
NORTH CAROLINA IS 1 OF ONLY 9 STATES IN THE US WHO DOES NOT
HAVE A STATE HEALTH PLAN
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- A Research Collaboration -
Rosalyn Lang , North Carolina A&T State University Takiyah Starks, North Carolina A&T State University Dora Som Pim-Pong, North Carolina A&T State University Jennifer Byrd, North Carolina A&T State University Vinaya Kelkar, North Carolina A&T State University Christopher Edwards, Duke University Medical Center, Department of Medicine Margaret Pericak-Vance, University of Miami Institute for Human Genomics Jonathan Haines, Vanderbilt University Center for Human Genetics/Case Western Jennifer Manley, Columbia University Richard Mayeaux, Columbia University Yi-Ju Li, Duke University Center for Human Genetics Alzheimer’s Disease Genetics Consortium
- Current Project Funding -
National Institute on Aging, NIH, R01AG28786 National Center on Minority Health and Health Disparities, NIH P20DM000546 Merck, Inc, CCO-121217
Acknowledgments
THANK YOU
ANY QUESTIONS?
College of Arts and Sciences North Carolina A&T State University
1601 East Market Street Greensboro, NC 27411
888.248.2808
info@coaachhealth.org
www.coaachhealth.org
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