Abstract A038: Increasing involvement and accrual in research studies from communities of underrepresented populations through the lens of a community based participatory approach via the Community Research Registry (CoRR)
Authors: Asto-Flores Emelina , Mir Chelsea , Goncalves Sandy , Garzon Giovanna Moreno , Heendeniya Nuwanthi , Crook Jennifer , Odedina Folakemi 
Published: December 2023

Introduction: Underrepresented communities experience a lack in research participation due to multifaceted barriers including historical research mistrust, language barriers, transportation inaccessibility, and other social determinants of health. The disproportionate representation in racial, ethnic, and medically underserved communities furthers the gap in health disparities and treatment outcomes. For this reason, the Mayo Clinic Community Research Registry (CoRR) was developed in 2022 to specifically create a registry of underrepresented communities and connect them to research studies. Methodology: Mayo Clinic CoRR utilizes a community based participatory research (CBPR) approach involving bidirectional engagement with community participants, partnership with community stakeholders and leaders, dissemination of clinical trial information, and use of evidence-based education materials for community outreach. CoRR community partnerships include fraternities, sororities, churches, the American Legion, local physicians, pharmacies, clinics, and health fair events. Through questionnaires, study participants indicate the level of research participation they are comfortable with and are matched to research studies based on their individualized responses. New Unpublished Data: As of early June 2023, CoRR has 270 participants enrolled in the registry with 94% of participants being Black and 6% Hispanic. Average age of the participants is 63 years and includes 63% female and 37 % male. As community input is vital to its development, Mayo Clinic CoRR has partnered with a community advisory board for ongoing discussion of study procedures and recruitment initiatives.  This feedback has resulted in over 25 protocol modifications from bidirectional community input and engagement with the study to tailor it to community needs. Revisions include modification of inclusion and exclusion criteria to allow interested, low literacy participants to join, offering written and online platforms for participation in Somali, French, and Creole languages. CoRR adaptations have also implemented a community newsletter to visually provide updated CoRR information, highlight research studies in which CoRR participants have been included, as well as engage CoRR participants regularly. Future developments for CoRR include the establishment of an ad hoc Committee with registry participants to provide another level of safeguarding for enrolled CoRR participants. Conclusion: Responsivity to the needs of the community is vital for the continued development and success of Mayo Clinic CoRR, which has led to a successful ongoing enrollment of underrepresented communities into research studies. By utilizing targeted CBPR, the CoRR demonstrates a proof of concept in recruiting and retaining participants in hard-to-reach demographics with the goal of reducing health disparities in chronic diseases, including cancer. 

Citation Format: Emelina Asto-Flores, Chelsea Mir, Sandy Goncalves, Giovanna Moreno Garzon, Nuwanthi Heendeniya, Jennifer Crook, Folakemi Odedina. Increasing involvement and accrual in research studies from communities of underrepresented populations through the lens of a community based participatory approach via the Community Research Registry (CoRR) [abstract]. In: Proceedings of the 16th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2023 Sep 29-Oct 2;Orlando, FL. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2023;32(12 Suppl):Abstract nr A038.