Partnership with an African American sorority to enhance participation in cancer genetics research.
OBJECTIVE
Reduced minority participation in clinical research challenges researchers to consider novel recruitment modalities. This study describes a formal partnership between the National Educational Foundation of the Zeta Phi Beta Sorority and the Mid-Atlantic Cancer Genetics Network. The goal was to enhance awareness about inherited breast cancer and to increase enrollment in the national Cancer Genetics Network.


METHODS
In this descriptive, pilot study, two recruitment strategies across four states were undertaken: an onsite educational session at four Annual State Leadership Conferences and a 2-tiered direct mail campaign to the sorority membership.


RESULTS
Recruitment methods targeted over 1,200 well-educated African American women. Of the 279 attendees at the state conference educational sessions, only 3 women meeting the high risk eligibility requirement enrolled. Direct mail recruitment elicited 24 eligible women. Lessons learned are described.


CONCLUSIONS
Despite low accrual, the partnership laid a foundation for broader collaboration with the Zeta Phi Beta Sorority. In the future, collaboration with minority sororities and fraternities as part of standard registry recruitment should be explored.
Olsen
Sharon J
SJ
Mid-Atlantic Cancer Genetics Network, the Johns Hopkins University, Baltimore, MD 21205, USA. olsen@son.jhmi.edu
Malvern
Kathryn T
KT
May
Betty J
BJ
Jenkins
Issie L
IL
Griffin
Constance A
CA
D000328:Adult; D001741:Black or African American / Q000235:genetics* / Q000523:psychology; D000368:Aged; D005260:Female; D036281:Genetic Research; D006801:Humans; D008495:Medical Oncology; D008875:Middle Aged; D009369:Neoplasms / Q000235:genetics / Q000523:psychology*; D010358:Patient Participation; D010379:Peer Group; D012042:Registries; D013334:Students / Q000523:psychology*; D011795:Surveys and Questionnaires