dr. goldie s. byrd, dr. rosalyn lang,minoritymenshealthinitiative.hamptonu.edu/media/... ·...

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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