Objective: Brain tissue analysis is an invaluable resource to better understand PD progression, but there is limited access to this resource and swift postmortem collection remains a challenge. The goal of this study was to implement a centralized model to expand participant engagement in brain donation and increase likelihood of successful collections at time of death.

Background: The Parkinson’s Progression Markers Initiative (PPMI) is an observational study launched by the Michael J Fox Foundation for Parkinson’s Research in 2010. PPMI partners with 51 clinical sites (31 US, 20 non-US) to standardize longitudinal data/biospecimen collection. In 2017, the PPMI Pathology Core was established as a collaboration between Indiana University (IU) and Stanford University (SU) to facilitate brain tissue donation for US-based participants.

Method: PPMI participants were approached by study coordinators about brain donation, and if interested, referred to the centralized IU team for an introductory call. Agreeable participants completed an electronic informed consent and donation planning form. The IU team identified networks of removal specialists for local collection and supplied kit materials. Individualized donation plans were shared with all involved parties and plan details confirmed annually. Instructions directed individuals to page IU when health deteriorated or death occurred. These notifications activated plans and enacted the appropriate collection protocol (fresh or fixed) based on postmortem interval. Removed whole brains shipped to SU for neuropathological evaluation and tissue storage. A clinicopathological case conference presented research findings, and a summary was shared with the participant’s family.

Results: As of March 2024, 2,171 PPMI participants agreed to IU referral and 860 provided consent for brain removal. The IU team has successfully facilitated collection for each received notification of death, resulting in 25 collected brains (23 with PD and 2 unaffected).

Conclusion: The PPMI Pathology Core has streamlined brain donation through centralized consenting and planning. Annual confirmation of plans and 24/7 availability has mitigated risk of missing collections and all time-of-death notifications have converted to successful collections. Inclusion of brain tissue samples has enriched the robust PPMI datasets and available biospecimens.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/centralizing-brain-tissue-donation-for-a-large-multi-site-parkinsons-disease-pd-study/