C. Royal et al., Recruitment experience in the first phase of the African American Hereditary Prostate Cancer (AAHPC) Study, ANN EPIDEMI, 10(8), 2000, pp. S68-S77
The African American Hereditary Prostate Cancer (AAHPC) Study is an ongoing
multicenter genetic linkage study organized by Howard University and the N
ational Human Genome Research Institute (NHGRI), with support from the Offi
ce for Research on Minority Health and the National Cancer institute. The g
oals of the study are to: (i) look for evidence of involvement of chromosom
e 1q24-25 (HPC1) in African American men with hereditary prostate cancer (H
PC) and (ii) conduct a genome wide search for other loci associated with HP
C in African American men. To accomplish these goals, a network has been es
tablished including Howard University, the NHGRI, and sh Collaborative Recr
uitment Centers (CRCs). The CRCs are responsible for the identification and
enrollment of 100 African American families. To date, 43 families have bee
n enrolled. Recruitment strategies have included mass media campaigns, phys
ician referrals, community health-fairs/prostate cancer screenings, support
groups, tumor registries, as well as visits to churches, barber shops, and
universities. By far, the most productive recruitment mechanisms have been
physician referrals and tumor registries, yielding a total of 35 (81%) fam
ilies. Approximately 41% (n = 3400) of probands initially contacted by phon
e or mail expressed interest in participating; the families of 2% of these
mel the eligibility criteria, and 75% of those families have been enrolled
in the study, indicating a 0.5% recruitment yield (ratio of participants to
contacts). As the first large-scale genetic linkage study of African Ameri
cans, on a common disease, the challenges and successes of the recruitment
process for the AAHPC Study should serve to inform future efforts to involv
e this population in similar studies. (C) 2000 Elsevier Science Inc. All ri
ghts reserved.