Precompetitive Collaborations in Rare Disease Research

4:15 PM - 5:15 PM (EDT), Tuesday, June 6, 2023 ・ Session Room 204AB
Data only has value when it is discoverable, shareable, and usable, but most rare disease data instead exists in silos. By employing a nonprofit health technology model as the neutral convener, we can create robust programs and partnerships to ensure that rare disease data is maximally utilized.

This model benefits every stakeholder in this ecosystem: patients own and govern their data, leading to heightened research engagement. Rare disease researchers can apply machine learning methods to centralized, large datasets. And drug developers gain access to critical data, enabling more efficient preclinical research across a wider variety of rare diseases.

This panel looks to answers the question, “When are precompetitive, collaborative models most effective?”
Sr Director, Scientific Programs
Global Genes/ RARE-X
Assistant Professor of Pediatrics
University of Colorado School of Medicine
co-founder, LHON Collective; Managing Director