Rare Diseases Registry Program (RaDaR)

NCATS launched the Rare Diseases Registry Program (RaDaR) website to provide the rare diseases community with easily accessible guidance on how to set up and maintain high-quality registries that are based on best practices and data standards. The goal is to enable rare diseases patient organizations to better promote and support patient-focused research and the collection of patient data that can be used in developing treatments for rare diseases.

https://ncats.nih.gov/research/research-activities/RaDaR