Contact registry for health-related cancer research: Promoting inclusion in research
CANCER EPIDEMIOLOGY BIOMARKERS & PREVENTION(2023)
Abstract
Abstract Contact Registries are an essential resource in recruiting and retaining research participants. They are often used to gather contact and demographic information such as a person’s mailing address, age, phone number, race and/or ethnicity, and health interests which help to determine their eligibility for future studies. Contact Registries can play a key role in promoting research participation among underrepresented groups, and therefore aid in the elimination of cancer health disparities. The purpose of the Florida-California Cancer Research, Education, and Engagement (CaRE2) Health Equity Center Contact Registry was to create a database of Black/African American and/or Hispanic/Latino/a participants who are interested in learning about future research projects conducted at one of the following CaRE2 institutions: the Florida Agricultural and Mechanical University (FAMU), the University of Florida (UF), and the University of Southern California (USC). Our primary objective is to increase the number of persons aware of the conduct of cancer research, to ultimately increase the number of persons participating in cancer health-related research from African American and Hispanic/Latino communities in both Florida and California. The CaRE2 Contact Registry was implemented in August 2022 by the CaRE2 Community Outreach Core, one of the six (6) key cores within the CaRE2 Center. Recruitment consists of both in-person and online methods available in both Spanish and English and data storage through REDCap. For in-person enrollment a consent/authorization form and OPT IN survey are completed; meanwhile, our online recruitment requires an additional screening questionnaire. Eligibility for our registry requires that the participant resides in either California or Florida, must be 18+ years old, Black/African American, and/or Hispanic/Latino/a. In addition to collecting contact and demographic information, participants are able to choose their research study preferences. 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. Upon survey completion, a compensation of a $10.00 Walmart gift card, either in a physical or electronic version, is provided to each participant. 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/). With a targeted goal of 2,000 participants, we currently have 509 at UF; of which, 440 are Black/African American and 69 Hispanic/Latino, and have agreed to learn more about cancer research in their communities. In conclusion, we present information on our innovative recruitment efforts that can be beneficial in other community-based participatory research studies. We also share the challenges and barriers experienced when implementing this registry. It is of high importance to engage minorities in these types of registries for representation in these areas of cancer research. Citation Format: Ileana Guzman, Brooke Hensel, Carolina Aristizabal, Eduardo Ibarra, Rosa Barahona, Brandon Hazelton-Glenn, Diana Wilkie, Janice Krieger, Mariana C. Stern, Sandra Suther, Lourdes Baezconde-Garbanati, Fern Webb. Contact registry for health-related cancer research: Promoting inclusion in research [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 A057.
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