Recruitment of Black Women for a Study of Inherited Breast Cancer Using a Cancer Registry-Based Approach

Introduction: We sought to understand the factors associated with recruitment activities while conducting a registry-based study of black women found to have breast cancer <age 50 to investigate mutations in the BRCA1 and BRCA2 genes. Methods: State mandated recruitment methods included TWO mailings, followed by a telephone response card for patients who did not wish to be contacted by phone. If no response was received within 3 weeks of the second mailing, the study team contacted the patient by phone. Results: Of the 209 eligible patients identified by the cancer registry, contact was established in 87, of whom 82 were eligible for study participation. The overall rate of interest in study participation was 80% (including 93% for those with passive follow-up and 68% for those with active follow-up), with the primary factor cited being the desire to understand more about the risk of cancer for family members. Conclusion: This is the first study conducted through a State Cancer Registry, in which the primary goal was to recruit participants for genetic counseling and testing for inherited breast cancer. In contrast to many prior studies, our results suggest that young black women with breast cancer are interested in participating in genetics studies.