Patient Registries: What They Are and How to Start One

Have you heard of a patient or natural history registry but have no idea what it was? Interested in starting a registry for your patient population but not sure where to start?

These topics and more were covered in an educational webinar hosted by NORD. NORD’s Research Programs Manager, Suzanne Rossov, gives an overview on what registries are, the various types of registries, and the benefits of participating in them. Then, Alexandra Kruse from the Platelet Disorder Support Association talks about her organization’s experience with starting a registry as well as the challenges they faced.

This recording is perfect for patients, caregivers, rare disease patient organization leaders, and researchers who want to learn more about registries.