Partnership with an African American sorority to enhance participation in cancer genetics research

Community Genet. 2008;11(4):201-7. doi: 10.1159/000116880. Epub 2008 Apr 14.

Abstract

Background/aims: 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.

Conclusion: 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.

Publication types

  • Research Support, N.I.H., Extramural

MeSH terms

  • Adult
  • Aged
  • Black or African American / genetics*
  • Black or African American / psychology
  • Female
  • Genetic Research*
  • Humans
  • Medical Oncology*
  • Middle Aged
  • Neoplasms / genetics
  • Neoplasms / psychology*
  • Patient Participation*
  • Peer Group*
  • Registries
  • Students / psychology*
  • Surveys and Questionnaires