Data from and about patients is essential in order to advance biomedical research, but its collection and dissemination can be a significant investment of time and resources for patient organizations that choose to be the intermediary. Patient groups and their research collaborators have to determine what data is needed, how to ethically and securely collect it, how it will be managed, what can be shared, and how these efforts will be funded and sustained long-term. On this webinar, we will hear from leaders within the patient organization community on models they have employed to collect and share a range of types of patient data for research, as well as how they have thought about and addressed issues of guiding principles, governance, and sustainability. This webinar is part of a series from The Research Acceleration and Innovation Network (TRAIN) from FasterCures.

Read the Summary

Moderator

Kristin Schneeman
Director, FasterCures, a Center of the Milken Institute

Speakers

Caren Heller
Chief Scientific Officer, Crohn’s & Colitis Foundation

Sharon Terry
CEO, Genetic Alliance

David Walton
CEO, T1D Exchange