Abstract 1003: Contact registry for health-related cancer research: Promoting inclusion in research
Authors: Fern Webb, IIeana Guzman, Brooke Hensel, Eduardo Ibarra, Carolina Aristizabal, John Luque, Rosa Barahona, Diana Wilkie, Mariana C. Stern, Lourdes Baezconde-Garbanati, Sandra Suther
Journal: Cancer Research (2024)

Abstract Contact Registries can serve as key tools in connecting community members to cancer health research opportunities. Members of underrepresented groups who enroll in a contact registry can choose to participate in studies they find interesting, provided they are an ideal candidate for participation. However, limited information exists regarding the types of studies underrepresented groups would want to participate in. The Florida-California Cancer Research, Education, and Engagement (CaRE2) Health Equity Center Community Outreach Core (COC) created a contact registry of community members self-identifying as Black/African American (B/AA) and/or Hispanic/Latinx (H/L) persons who are interested in learning about future research studies conducted at CaRE2 institutions. The CaRE2 Contact Registry was implemented in August 2022 by the CaRE2 COC, one of the six (6) key cores within the CaRE2 Center. COC’s primary objective is to increase the number of persons participating in cancer research, which ultimately produces findings more applicable to the broader, diverse population of B/AA and H/L communities in both Florida and California. Our study team promotes the registry at local community events and through our center’s social media accounts and website (https://care2healthequitycenter.org/the-care2-contact-registry/). Recruitment consists of both in-person and online methods provided in both Spanish and English with data stored on REDCap, an online data repository system. For in-person enrollment, a consent/authorization form and OPT-IN survey are completed; meanwhile, our online recruitment requires additional screening to ensure eligibility. Eligibility requires that the person resides in 1) either California or Florida, 2) be 18+ years old, and 3) identify as B/AA or H/L. In addition to collecting contact and demographic information, participants can choose their research study interests. For example, they can choose to participate in surveys, community forums, focus groups, a cancer advocacy training program, and/or to provide a hair, saliva, or blood sample. A $10.00 gift card, either in a physical or electronic format, was provided to each confirmed enrollee. As of November 13, 2023, 1,269 persons have enrolled, representing 63% of the 2,000 enrollment goal. While 92% of registry enrollees are willing to participate in health research involving surveys, only 20% are willing to participate in health research studies requiring saliva (23%), hair (22%), or blood (20%) donations. In conclusion, registry enrollees, regardless of race or ethnicity, have a high interest in participating in studies involving completing surveys or attending focus groups. However, efforts must continue to increase participation willingness for research involving biospecimen donation. Future efforts will also include connecting enrollees to cancer health-related research studies of their interest. Citation Format: Fern Webb, IIeana Guzman, Brooke Hensel, Eduardo Ibarra, Carolina Aristizabal, John Luque, Rosa Barahona, Diana Wilkie, Mariana C. Stern, Lourdes Baezconde-Garbanati, Sandra Suther. Contact registry for health-related cancer research: Promoting inclusion in research [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2024; Part 1 (Regular Abstracts); 2024 Apr 5-10; San Diego, CA. Philadelphia (PA): AACR; Cancer Res 2024;84(6_Suppl):Abstract nr 1003.