Featured

ROADMAP Natural History 101 - Power of Patient Experience: Basics of Natural History Registries



Published
2-24-22
Natural History 101
Power of the Patient Experience: The Basics of Natural History Registries

Gain a clear understanding of how patient participation in natural history studies harnesses the power of the PSC patient experience to drive research and drug development.

Speakers:
Bettina Hansen, PhD,
University of Toronto
Gideon Hirschfield, BChir, PhD
University of Toronto
Cara Mack, MD
Children's Wisconsin, Medical College of Wisconsin

Goals:
* Understand how patient data, like lab work and medical records, drive future research and drug development for PSC
* Discover how researchers and clinicians collect data
* Learn what it means to study the natural history of PSC
* Discuss how quality of life and patient-reported data are a critical component of PSC Natural History Registries
* Review why your patient voice and participation in Natural History Registries are so important
Category
Health
Be the first to comment