Lourdes Gonzalez holding tissue sample (photo by Steve Zylius)
Postmortem neuropathological examination of brain tissue is considered the gold standard for understanding many neurological diseases, including Alzheimer’s disease and related dementias (ADRD). Although fluid and imaging biomarkers provide scientists and clinicians with valuable insights into the diseases of the brain, these measures are standardized with brain autopsy to give researchers direct evidence needed to confirm diagnoses, study disease processes, and develop future treatments. Neuropathological examination can only be made through the generous gift of brain donation.
A new resource website is being launched for brain tissue repositories to help improve both the technical standards and the human-centered practices of brain donation. Supported by a Research!America Public Engagement Training Content Microgrant Program, this initiative highlights the importance of scientific rigor but also honors the belief that brain donation is a human experience grounded in dignity and trust.
The Best Practices in Brain Donation module of the website offers staff and collaborators clear guidance on the technical procedures that ensure the highest quality of tissue procurement. It emphasizes the importance of timeliness, compliance with IRB oversight, reliable transportation protocols, and rigorous record keeping and inventory. Together, these practices protect the integrity of the donation process and provide researchers with the high-quality tissue needed to drive discoveries in ADRD.
The Compassionate Communication module of the website complements the technical training by focusing on the human side of donation. It prepares staff to approach families during moments of grief with empathy, authenticity, and cultural sensitivity. Through scenarios, reflection prompts, and practical FAQs, participants learn how to communicate clearly, address misconceptions respectfully, build trust and rapport, and provide meaningful follow-up and continued support. Importantly, this module also acknowledges staff wellbeing, offering strategies for resilience in emotionally challenging work.
These training resources are designed to be living and evolving tools. Future updates will include the development of educational videos to reinforce learning through visual demonstration, as well as focus groups with families whose loved ones donated their brains to science. These focus groups, conducted in both English and Spanish, will bring the family perspective into the training directly, ensuring that the resource grows in authenticity, inclusivity, and impact.
This project was led by Justine Silva, a UCI MIND doctoral student in Dr. Elizabeth Head’s Lab who worked as a brain tissue coordinator at UCI MIND for several years. She partnered with the UCI MIND Tissue Repository staff — Kevin Wood, Lourdes Gonzalez, Sierra Wright, Bri Gawronski, and Jillian Berry — and received advising and mentorship from Drs. Crystal M. Glover and Megan Witbracht. Their combined expertise shaped this project into a resource that will serve both researchers and families.
Dr. Crystal M. Glover leads a mixed methods training to help Justine Silva (far left) and team develop focus groups.
This work was made possible through the Research!America Public Engagement Training Content Microgrant Program, which welcomes novel ideas to develop and test public engagement training content for those in STEMM fields. You can learn more about the microgrant program here: https://sites.mind.uci.edu/brain-donation-modules/
