Recruitment strategies and lessons learned from a large genetic study of African Americans

Abstract

Genetic studies must enroll large numbers of participants to obtain adequate statistical power. Data are needed on how researchers can best use limited financial and practical resources to achieve these targets, especially in under-represented populations. This paper provides a retrospective analysis of the recruitment strategies for a large glaucoma genetics study in African Americans. The Primary Open-Angle African American Glaucoma Genetics study enrolled 10,192 African American subjects from the Philadelphia region. Major recruitment approaches included clinic enrollment from University of Pennsylvania (UPenn) sites, clinic enrollment from external sites, sampling of Penn Medicine Biobank (PMBB), and community outreach. We calculated the enrollment yield, cost per subject, and seasonal trends of these approaches. The majority (65%) of subject were enrolled from UPenn sites with an average cost of $133/subject. Over time, monthly case enrollment declined as the pool of eligible subjects was depleted. Expanding to external sites boosted case numbers ($129/subject) and the biobank provided additional controls at low cost ($5/subject), in large part due to the generosity of PMBB providing samples free of cost. Community outreach was costly with low return on enrollment ($978/subject for 220 subjects). Summer months (Jun-Aug) produced the highest recruitment yields (p<0.001). Genetic studies will benefit from a multi-pronged and culturally sensitive recruitment approach. In our experience, the biobank was most cost-effective for control enrollment, while recruitment from clinics (including expansion to new sites) was necessary to recruit fully phenotyped cases.

Features Associated with Visible Lamina Cribrosa Pores in Individuals of African Ancestry with Glaucoma: Primary Open-Angle African Ancestry Glaucoma Genetics (POAAGG) Study

“…All subjects were ≥35 years and self-identified as Black (African ancestry, Afro-Caribbean, or African American). University of Pennsylvania (UPenn)-certified clinical research coordinators identified subjects during clinical visits to the Scheie Eye Institute, Perelman Center for Advanced Medicine, Philadelphia VA Medical Center, and Mercy Fitzgerald Hospital, as well as two neighboring ophthalmology clinics in Philadelphia, Pennsylvania (Windell Murphy, MD; Temple University) [ 21 ]. Additionally, a multimedia marketing campaign was employed with trusted African-ancestry community leaders to disseminate information and build trust in the community [ 22 ].…”

The Inclusion of Underrepresented Populations in Cardiovascular Genetics and Epidemiology

“…Several large-scale endeavors are responding to these recommendations, including the development of multi-ethnic biobanks that can be used for genetics research purposes [103][104][105][106][107][108]110]. Given the sheer number of data points needed for wellpowered genetics studies, the cost-benefit in the case of large-scale biobank development is evident [147]. Funding is paramount in genetics research, and financial support for genetics studies in underrepresented populations illustrates the progress that can be made [61].…”

“…Funding is paramount in genetics research, and financial support for genetics studies in underrepresented populations illustrates the progress that can be made [61]. Simultaneously, care and culturally appropriate methods should be implemented in the building of such databases to ensure harm is not perpetuated and that population-specific contexts and goals are honoured [146,147]. While the addition of underrepresented populations to GWASs and biobank studies progresses, novel strategies in the cardiogenetic analysis of multi-ethnic data sets already available should be utilized and developed to begin increasing health and genetic care equity for underrepresented populations [113,114,148].…”