OTHR-16. Gift From a Child: Insights into Trend Variability in Post-Mortem Brain Tumor Tissue Donation from a Multi-Institutional Program

Abstract Post-mortem brain tumor tissue donation programs are crucial for advancing research and improving treatment outcomes. However, their effectiveness can be hindered by differences in institutional policies, resources, and geographic factors. This study evaluates trends within the multi-institutional Gift from a Child (GFAC) program to identify areas for standardization and improvement. Data from seven regional centers representing over 40 referral locations were analyzed, focusing on metrics such as patient care setting, patient status, and referral source at the time of donation. Variability in donation practices was observed, particularly in the proportion of donations from external referrals versus family/community sources. Some centers reported most donations from external referrals, while others relied on family or community sources. These differences raise questions about data collection and reporting standards. For example, if referral hospitals do not track who initiated donation discussions, it becomes unclear whether families or hospice/palliative care teams led the conversation. Only one institution with most discussions initiated by care teams reported a high proportion of referrals from care team members, suggesting discrepancies between referral sources and conversation initiation. Institutions with established research infrastructures such as those involved in clinical trials reported fewer barriers compared to smaller or newer centers. Institutional priorities also impacted donation feasibility, care continuity, and reporting practices. These findings underscore the need for standardized protocols to address discrepancies in donation practices and data reporting. Improved tracking of donation discussions, reporting standards, and streamlined workflows could enhance the efficiency of post-mortem tissue donation programs. Future research should focus on tracking the time between patient death and donation, refining donation discussion reporting, and exploring how patient age and family engagement influence discussions. Standardizing practices will help GFAC serve as a model for optimizing post-mortem brain tumor tissue donation programs and for expanding similar efforts to other diseases and institutions.