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To our knowledge, Gift From a Child (GFAC) is the only dedicated consortium providing autopsy resources for children with brain tumors. Using the parental data and the experience of being a multi-institutional post mortem CNS tumor collection program, GFAC seeks to inform medical professionals of the need to approach families about post-mortem donation and demonstrate how barriers to donation can be overcome. Much like the one that occurred for organ donation, a cultural shift is needed with the goal to offer every family the option to donate. Collected survey data shows, 98% of families who donated were satisfied with their decision, compared to 20% of families who did not donate being satisfied with their decision. Most families want to be provided the opportunity to chooseto donate, citing the desire to advance research and help future families. For families who donated, over 71% initiated the donation conversation with their clinician. Among those who did not donate, 58% reported they had not been asked. The healthcare team initiated the donation conversation only 20% of the time for both groups. Without the conversation being initiated, many families remain unaware of the necessity and impact of donation on advancing research. The timing and structure of how donation is brought up impacts if families proceed with donating, however, data shows that withholding this option is frequently more distressing for families. Parent interviews and survey data indicate the majority of families are most open to this conversation once it’s evident a child will not survive and during transition to hospice care. Presentation donation as a driver for research, helping the next child, and as a key step in the family’s grieving process positively correlate with a family’s decision to donate.

Implementation of access to donate post mortem tissue among pediatric brain tumor patients remains a challenge[DSM1] . Previous attempts to develop a post-mortem network have been jeopardized by barriers such as a lack of education, logistical coordination of donation, and difficulties effectively communicating the benefit of post-mortem donations to families. [CC2] Utilizing feedback from patients’ families, clinicians, and researchers, standard operating procedures (SOP) were developed and utilized by six “tissue navigators” (TN) working across institutions. Tissue navigators are critical in implementation of access to donate as they serve as a liaison between patients’ families and clinical team to ensure post-mortem tissue is procured correctly and respectfully. From 2018 through 2021, there has been an increase in donations, which has led to establishment of tumor cell cultures translating rapidly to clinical development, and a growing network of centers participating in GFAC procedures. Donations have been facilitated at over 75 institutions. GFAC has coordinated 146 donations in this 3-year launch timeframe, with nearly half from families outside GFAC’s primary institutional network. Barriers to implementation were addressed with the design of GFAC’s SOPs, which lead to the successful implementation of access to donation. GFAC is developing CME training for clinicians and researchers to address communication of post-mortem donation, continuing awareness campaigns with collaborators in the field, advocating for families to receive feedback on the donation, and expanding on the SOPs as more is learned from clinicians and families.

The involvement of patient families in clinical research in pediatric brain cancer is an underutilized tool that benefits all those involved. These families are ultimately responsible for making decisions on treatment, as well as end-of-life decisions such as post-mortem tissue donation. As demonstrated by organizations such as Gift from a Child, listening to family input on how to best have the conversation surrounding post-mortem tissue donation has led to an increase in total donations, as well as parents stating they are overwhelmingly happy with their decision to donate. Tissue donation is just one example of a large, complex hindrance in the field that had not previously been addressed successfully. Due to the rarity and devastating impact of pediatric brain tumors, the family community is tight-knit and passionate. There is incredibly impactful communication that happens between families influencing decision-making for treatment, funding, and advocacy. Partnering with families allows care teams and researchers both the ability to understand the decision-making process as well as educate and discuss with the families. Surveys of families overwhelmingly show satisfaction with the decision to donate post-mortem and dissatisfaction when they are deprived of the option. Frustration with the lack of treatment has led families to become more proactive in both their child’s treatment and future research. Increasingly, family advocates are becoming more sophisticated in their support of research opportunities. An example of this spearheading the creation of an open access, safe, anonymized data bank with clinical data paired to the patient’s tumor tissue. Family foundations are actively partnering with researchers and industry to make it happen. It is clear that this type of partnership is a strong force for change that benefits researchers, clinicians, and most importantly, patients and their families.