P1‐195: Ascertaining older african americans for genetic studies in Alzheimer's disease

Byrd, Goldie S.; Pericak‐Vance, Margaret A.; Edwards, Christopher L.; Taylor, A.; Kelkar, Vinaya A.; Byrd, Jennifer R.; Starks, Takiyah D.; Pimpong, Dora Som; Li, Yi-Ju

doi:10.1016/j.jalz.2009.04.201

Cited by 2 publications

(3 citation statements)

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“…Historically, African Americans as a group have not participated in clinical trials and health-related research, especially genetic research, and the numbers are more dismal among rural AA (Bonvicini 1998; Byrd et al 2009). A history of exploitation in minority rural communities may manifest in a number of ways, including fear and lack of trust and participation in research.…”

Section: Challenges Lessons Learned Recommendationsmentioning

confidence: 99%

Successes, challenges and lessons learned: Community-engaged research with South Carolina's Gullah population

et al. 2013

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Engaging communities is highly recommended in the conduct of health research among vulnerable populations. The strength of community-engaged research is well documented and is recognised as a useful approach for eliminating health disparities and improving health equity. In this article, five interdisciplinary teams from the Medical University of South Carolina present their involvement with community-engaged research with a unique population of Gullah African Americans residing in rural South Carolina. Their work has been integrated with the nine established principles of community-engaged research: establishing clear goals, becoming knowledgeable about the community, establishing relationships, developing community self-determination, partnering with the community, maintaining respect, mobilising community assets, releasing control, and maintaining community collaboration. In partnership with a Citizen Advisory Committee, developed at the inception of the first community-engaged research project, the academic researchers have been able to build on relationships and trust with this population to sustain partnerships and to meet major research objectives over a 20-year period. Challenges observed include structural inequality, organisational and cultural issues, and lack of resources for building sustainable research infrastructure. Lessons learned during this process include the necessity for clearly articulated and shared goals, knowledge about the community culture, and embedding the cultural context within research approaches. Keywords: Engaged health research, vulnerable populations, longterm collaboration, South Carolina 'Gullah' communities

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Section: Challenges Lessons Learned Recommendationsmentioning

confidence: 99%

Successes, challenges and lessons learned: Community-engaged research with South Carolina's Gullah population

et al. 2013

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“…Moreover, the failure of researchers to enroll subjects across relevant populations may jeopardize study data generalizability, thereby limiting study findings (Bowen and Penchaszadeh 2008; Swanson and Ward 1995; Byrd et al 2009; Patterson et al 2008). In fact, diseases that affect patients across ethnic and racial lines require an appreciation for the confounding effects of race, culture, environmental and geographical factors, and ancestral origin (Bowen and Penchaszadeh 2008; Swanson and Ward 1995).…”

Section: Introductionmentioning

confidence: 99%

“…There is a lack of published literature describing recruitment strategies among diverse African-American populations and even fewer published studies for enrolling African-American families into genetic research studies (Royal et al 2000; Byrd et al 2009; Levkoff and Sanchez 2003; Corbie-Smith et al 2008; Taylor 2009). We will share our experiences with recruitment to address the gap in the literature regarding strategies for recruiting and enrolling rural African-American families into genetic research studies.…”

Section: Introductionmentioning

confidence: 99%

Enhancing recruitment of African-American families into genetic research: lessons learned from Project SuGar

Spruill

2010

J Community Genet

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Despite some recruitment success in biomedical research among minorities, participation by African-American families into research, specifically genetic research, is lower than Caucasian families (Bowen and Penchaszadeh Community Genet 11:189–190, 2008). Such low participation rates by African-Americans prevent the exploration of specific ethnic differences in patterns of diseases and diminish the identification of specific disease risks among ethnic groups (Bowen and Penchaszadeh Community Genet 11:189–190, 2008). Although African-Americans are heterogeneous, few studies exist to describe effective recruitment strategies across diverse African-American populations, and even fewer studies share effective strategies for the enrollment of African-American families into genetic research. A process evaluation of recruitment strategies used by Project SuGar (a community-based genetic research study focusing on families affected by type 2 diabetes) to enroll African-American families into genetic research was conducted. Our goal was to enroll 400 affected African-American families, and our results yielded 672 families, (n=672). Our success can be attributed to the formation of a Citizen Advisory Committee, recruitment style, flexible protocol, and formal agreement with community health centers. We found that African-American families will participate in research and that providing tangible benefits to the community and utilizing a sense of patience can enhance positive recruitment results. Data from this study may be used to recruit geographically isolated families into genetic research.

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P1‐195: Ascertaining older african americans for genetic studies in Alzheimer's disease

Cited by 2 publications

References 0 publications

Successes, challenges and lessons learned: Community-engaged research with South Carolina's Gullah population

Successes, challenges and lessons learned: Community-engaged research with South Carolina's Gullah population

Enhancing recruitment of African-American families into genetic research: lessons learned from Project SuGar

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