Transforming Pediatric Rare Disease Research: Dr. Ramin Eskandari on Neurosurgery, Biorepositories, and Empowering Families and Medical Teams to Save Residual Samples

Show Notes: Transforming Pediatric Rare Disease Research with Dr. Ramin Eskandari
In this episode, I’m joined by Dr. Ramin Eskandari, a pediatric neurosurgeon at MUSC who is revolutionizing rare disease research through his innovative work with biorepositories. Dr. Eskandari shares how his dedication to helping children and families has driven him to create a system that collects and preserves valuable CNS samples—residual materials that would otherwise be discarded. We discuss the incredible impact of these efforts on the future of rare disease therapeutics and how families can play an active role in advancing research.
Highlights:

Dr. Eskandari’s Path to Pediatric Neurosurgery

The Inspiration Behind the Biorepository Project

What Are Biorepositories and Why They Matter

Advocating for Residual Sample Collection

Overcoming Challenges in Setting Up a Biorepository

Data Sharing and Expanding Access

Scaling This Initiative to Other Institutions

Links:
Combined Brain
The Medical University of South Carolina