Abstract B088: The Alabama Hereditary Cancer Cohort – New strategies for African American recruitment

Abstract

Our group has established the Alabama Hereditary Cancer Cohort and primarily investigates breast cancer genetics in African American, an underrepresented group in biomedical research. Alabama has double the national percentage of African Americans and is the location of the infamous and unethical Tuskegee Syphilis Study. Therefore, strategic protocols were developed to break research participation barriers, effectively recruiting African American hereditary breast cancer cases and families. Our initial recruitment strategies involved both hospital-based and community-based recruitment; the latter involved our recruitment bus, the Gene Machine, and focused on African American engagement. Since our initial publication, our community-based recruitment protocol has been modified. Many of the modifications were due to the pandemic, limiting in-person community engagement. In-person education seminars and enrollment sessions transitioned to virtual meetings, using various video-conferencing platforms. Regarding virtual enrollments, upon agreement to proceed with the virtual consent process, study participants are mailed an enrollment kit containing study consent forms, saliva collection kits, return mailing materials, and instructions. Once received, an enrollment appointment is made, and the consent process follows the procedure for in-person study enrollment, concluding with the saliva sample collection. Once collected, the sample is packaged with the consent forms and returned to our laboratory in the postage-paid mailer. Community-based recruitment has also been enhanced by partnering with the Alabama Department of Public Health to identify study participants through the Alabama Statewide Cancer Registry, similar to the very successful Carolina Breast Cancer Study. Furthermore, Research Champions have been added to the protocol, defined as primary healthcare providers and specialists who aid in recruitment by identifying individuals who fit the study criteria. The concept of Research Champions was developed after recognizing that the requirements to execute hospital-based recruitment are arduous on partnering hospitals. Thus, the sole function of a Research Champion is identifying prospective study participants, relieving the burden on physicians and hospital staff. Lastly, our Gene Machine Facebook page and newly designed website, tailored towards laypeople/study participants, facilitate additional engagement through ads, videos, and photos. Ultimately, these processes reduce the travel burden, aid in social distancing, and expand our reach, enhancing recruitment and enrollment efforts and breaking barriers to African American research. Citation Format: Nancy Merner, Elizabeth Stallworth, Erica Reasor, Katia Khoury, Lily Gutnik, Meagan Farmer, Brandon Johnson. The Alabama Hereditary Cancer Cohort – New strategies for African American recruitment [abstract]. In: Proceedings of the 15th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2022 Sep 16-19; Philadelphia, PA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2022;31(1 Suppl):Abstract nr B088.