ID #248 Trends in post-mortem research donation reported by the Gift from a Child program in the United States.

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Abstract Background Despite national efforts such as the Gift from a Child (GFAC) program, participation in research-based autopsy remains inconsistent across pediatric neuro-oncology. Prior single-institution studies have identified disparities in consent related to race/ethnicity, preferred language, and insurance status. In this study, our objective was to provide a multi-institutional descriptive analysis across GFAC Centers of Excellence (COEs) to examine characteristics associated with participation in postmortem tissue donation at a national level. Procedure We performed a multi-institutional retrospective cohort study of pediatric patients with central nervous system (CNS) malignancies who died from their disease between [date] and [date]. Participating sites were active GFAC COEs following standardized practices for offering research-based autopsy. Individual-level data included clinical characteristics (diagnosis, grade, treatment history), demographic variables (race/ethnicity, age, preferred language, religion), and insurance status. Results Among the 103 patient families, 52/103 (50.5%) consented to autopsy. There were several demographic trends in the consented (C) versus declined (D) groups. Patients of non-Hispanic/Latino ethnicity (C: 49.3% vs. D: 50.7%) showed a higher likelihood of consenting than Hispanic/Latino (C: 25% vs. D: 75%). Insurance status showed a similar pattern, with private insurance (C: 64.6% vs. D: 35.4%) having a higher rate of consent compared to Medicaid (C: 29.7% vs. 70.3%). Additionally, Catholic families are less likely to provide consent (C: 36.4% vs. D: 63.6%). 8/103 (7.8%) patients did not list English as their preferred language, and only 1 of these patients consented to the autopsy. These findings were consistent with previously reported data from 2021-2022. Conclusions In this multi-institutional cohort, these findings underscore the need for strategies aimed at improving communication pathways for non-English-speaking families. Culturally informed consent processes can guide future research advancements to benefit all children with CNS malignancies.

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