Abstract A64: Evaluating the feasibility of a cancer registry-based recruitment strategy to obtain saliva samples for genetic association analysis in an ethnically diverse sample of breast cancer survivors
Authors: Ford Marvella E. , Burshell Dana , Kramer Rita M. , Alberg Anthony J. , Bryant Debbie C. , Bauza Colleen E. , Hazelton Tonya R. , Mosley Catishia , Bolick Susan , Hurley Deborah , Kistner-Griffin Emily , Cunningham Joan E. 
Published: May 2015

Abstract
Introduction: African American (AA) women are disproportionately impacted by breast cancer mortality; this disparity may be related to their higher burden of triple-negative breast cancer. Despite the disparity, AA women participate in breast cancer research at lower rates than European American (EA) women. We have analyzed interim recruitment outcomes in an ongoing feasibility study of 90 women in South Carolina (SC) with recently diagnosed breast cancer, in which we are investigating the prevalence of genetic (saliva) markers which may be associated with risk of triple-negative breast cancer.
Methods: In this ongoing study, recruitment proceeds in two phases. In Phase 1, the SC Central Cancer Registry (SCCCR) identifies AA and EA patients through the registry. The SCCCR mails a letter to each identified patient's physician to obtain passive consent from the physician. After attainment of passive consent, the SCCCR director mails an introductory study letter to each identified patient. Then an AA SCCCR interviewer calls each patient to obtain active consent prior to sharing the patient's contact information with Medical University of SC (MUSC) study staff. In Phase 2, MUSC study staff send a recruitment letter to each patient after which an AA MUSC interviewer administers a telephone-based eligibility screener. Eligible patients are invited to the study and are asked to return a signed consent form and saliva sample in separate postage paid envelopes. To evaluate the effectiveness of our recruitment protocol, we are monitoring participation rates of women from each ethnic group.
Results: From April 2012 through August 2013, the SCCCR identified 387 patients (Phase 1), of whom 172 opted in (44.4%) and were referred to MUSC for eligibility screening. One hundred and thirty-six women (79.1% of those referred) have completed screening interviews; 42 were ineligible due to stage of disease or ethnicity (30.9%) and 5 declined (3.7%). Of the 89 women eligible and willing to participate in the study, 78 (87.6%) have signed a consent form and thus far 66 of them (84.6%) have provided saliva samples. Overall, recruitment and retention rates are very similar for EAs and AAs. However, ethnic differences in refusal rates are apparent at different points in the recruitment process. In Phase 1, we found that AAs were more likely to opt out, not able to be contacted, or passively refuse during the SCCCR recruitment activities (55.4% AAs vs. 41.7% of EAs). In Phase 2, EAs were more likely to actively or passively refuse after agreeing to be contacted by MUSC staff (10.9% of AAs vs. 27.4% EAs). We are continuing to monitor this trend. Recruitment of AAs and EAs is nearly complete, with saliva samples collected thus far from 37 AA and 29 EA women.
Conclusions: The study results demonstrate the success of our two-phase cancer registry-based method to identify and recruit participants. The strength of this strategy is shown by the similar numbers of AAs and EAs recruited to this genetic study. On a broader level, increasing numbers of women in the US are diagnosed annually with breast cancer. Therefore, it is critical to identify genetic markers for this disease and to develop effective recruitment strategies to enhance the diversity of participants in genetic research. Our study methods pave the way for future large-scale recruitment strategies.
Citation Format: Marvella E. Ford, Dana Burshell, Rita M. Kramer, Anthony J. Alberg, Debbie C. Bryant, Colleen E. Bauza, Tonya R. Hazelton, Catishia Mosley, Susan Bolick, Deborah Hurley, Emily Kistner-Griffin, Joan E. Cunningham. Evaluating the feasibility of a cancer registry-based recruitment strategy to obtain saliva samples for genetic association analysis in an ethnically diverse sample of breast cancer survivors. [abstract]. In: Proceedings of the Sixth AACR Conference: The Science of Cancer Health Disparities; Dec 6–9, 2013; Atlanta, GA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2014;23(11 Suppl):Abstract nr A64. doi:10.1158/1538-7755.DISP13-A64