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

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Abstract

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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Acknowledgments

The author thanks the Project SuGar research team, social workers, and nursing students, especially research nurses: Pam Wilson, RN, Susan Cromwell, LPN, Gwen Maine, RN, Mattie Wideman, LPN, Fredricka H. Joyner, PNP, MSN, Karen W. Small, LPN, Gloria Smith, LPN, Debbie Daniels, LPN, Andréa Collins, RN, data managers Cedric Rivers, MD, Ann Smunniewski, and, most importantly, the families from the Sea Islands who participated in the Project SuGar research study. Special thanks to first PI, Dr. W.T Garvey, and current PI, Dr. Jyotika Fernandes.

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Correspondence to Ida J. Spruill.

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Spruill, I.J. Enhancing recruitment of African-American families into genetic research: lessons learned from Project SuGar. J Community Genet 1, 125–132 (2010). https://doi.org/10.1007/s12687-010-0017-x

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