ID #558 A single institution retrospective chart review of postmortem tissue donation in pediatric CNS tumor patients

Background

Postmortem tumor tissue donation is crucial in furthering research for fatal tumors, including pediatric central nervous system (CNS) tumors. The purpose of the study is to evaluate our institutional implementation and standardized referral process for the Gift from a Child (GFAC) program through rates of tumor tissue donation dicussions, and patients who then pursued postmortem tissue donation. To provide comparable baseline data, chart review included six years prior to our partnership with GFAC. This session aims to review our institutional experience and to support other institutions in developing similar guidelines, thereby expanding access to this important program for all pediatric CNS tumor patients.

Method

The GFAC program was established in 2018, with Children’s Minnesota initiating patient referrals in 2019. We conducted a retrospective review of the electronic health records of children with primary CNS tumors who died between 1/1/2013 through 09/01/2025. Additionally, our institution developed a standardized guideline with the goal of ensuring equitable access to postmortem tumor tissue donation for all neuro-oncology patients, regardless of geographical location.

Results

The records of 129 patients falling within the established date range were reviewed for eligibility; with 94 patients eligible. There were 45 eligible patients who died prior to implementation; of those 26 patients had documented postmortem tissue donation discsusions and 12 went on to donate tissue. After our partnership with GFAC, 45 eligible patients passed away with 37 having documented tissue donation discussions, and 22 completing tissue donation. There was a non-significant 17.7% increase tissue donation discussions and 18.2% increase in tissue donation after partnering with GFAC.

Conclusion

While not statistically significant, objectively, there was improvement in both the rates of tissue donation discussions and donations since the GFAC program was established. Our institution will continue to work towards offering postmortem tumor tissue donation to every patient who qualifies.

1. Frenkel B, Gerasimov E, Gustafson A, Gustafson P, McLean G, Ochasi A, Waanders A, Ramaswamy V. Postmortem Tissue Donation: Giving Families the Ability to Choose. J Clin Oncol. 2023 Jan 20;41(3):447-451. doi: 10.1200/JCO.21.02839. Epub 2022 Aug 26. Erratum in: J Clin Oncol. 2023 May 10;41(14):2669. doi: 10.1200/JCO.23.00479. PMID: 36027484.