Background: The UC San Diego (UCSD) Moores Cancer Center Biorepository (BR) is a College of American Pathologists (CAP)-accredited core. The BR provides a full array of services including tissue biobanking following informed consent, under an IRB-approved protocol. However, internal review demonstrated low enrollment of minority populations.
Methods: In January 2018, the BR launched the MORE (Minorities Outreach Repository Effort) Initiative to: 1) increase research participation by minorities, 2) evaluate the perceptions of research participation by minority groups, 3) evaluate the disease group distributions of minorities at our institution, and 4) increase the participation of minorities in clinical research. Oncology clinic schedules were prescreened, and patients were identified for potential enrollment. Eligible patients were interviewed and informed consent was obtained in collaboration with the treatment teams. The research consent form was translated from English into Spanish, Russian, Vietnamese, Farsi, Tagalog, Simplified Chinese, and Arabic to enable the participation of non-English speaking patients. Race and ethnicity data were obtained from the Epic electronic medical record. Perception of minorities towards tissue collection was evaluated as the percentage of patients who declined consent. Disease distribution was obtained from the California Cancer Registry (data specific for the MCC).
Results: Since MORE began, we increased minority participation in our study by 213%. The percentage of declines was similar between Hispanics and non-Hispanics in general, although there was a significantly higher number of declines among Asians and non-Hispanic African Americans, 8% vs. 19% (p =0.01). Disparities were observed in disease distribution with Hispanics having lower incidences of skin cancers, soft tissues/bone sarcomas (12.94% vs. 86.57%; p =0.066), and the highest for liver diseases (41.76% vs. 57.14%; p=0.00001), as compared with all other populations. Surprisingly, the number of patients consulting for genitourinary (GU) and breast diseases is significantly lower in Hispanics, as compared with all other ethnic groups (16.08% as compared with 83.45% for GU, and 20.41% as compared with 79.14 % for breast). In addition, from 420 who self-identified as belonging to a minority group, only 37.5% needed translation.
Conclusions: The MORE initiative has been demonstrated to be an efficient way of increasing the participation of minorities, and has allowed us to better understand research participation perceptions and disease distribution in this group. We are now moving to follow up these preliminary results with a full research trial, to start early next year.
Citation Format: Sharmeela Kaushal, Jim Salinas, Katherine Crouthamel, Jason K. Sicklick, Alfredo A. Molinolo. Increasing the participation of minorities in research in a biorepository in UC San Diego, California [abstract]. In: Proceedings of the Eleventh AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2018 Nov 2-5; New Orleans, LA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2020;29(6 Suppl):Abstract nr A042.