Barriers to Enrollment in a Pediatric Critical Care Biorepository

BACKGROUND: Individuals of minority race/ethnicity have lower rates of participation in genomic research. This study evaluated sociodemographic characteristics associated with decisions to enroll in a pediatric critical care biorepository. METHODS: Parents of children admitted to the PICU between November 2014 and May 2017 were offered to enroll their child in a biorepository using a single page opt-in consent. Missed enrollment was assessed by failure to complete the form or declining consent on the form. We conducted a retrospective chart review for sociodemographic and clinical information. Bivariate and multivariable regression analyses were performed. RESULTS: In 4055 encounters, representing 2910 patients with complete data, 1480 (50%) completed the consent form and 1223 (83%) enrolled. We found higher odds of incomplete consent for non-English speaking parents (OR = 2.1, p < 0.0001) and parents of children of all races except non-Hispanic White (OR = 1.27–1.99, p < 0.0001). We found higher odds of declined consent in patients with Medicaid (OR = 1.67, p = 0.003) and parents of children of all races except non-Hispanic White (OR = 1.32–2.9, p < 0.0001). CONCLUSION: Inability to enroll patients in a critical care biorepository may be associated with several sociodemographic factors at various points in recruitment/enrollment.