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. A registry is a collection of information about individuals, usually focused around a specific diagnosis or condition. The goal is to enable rare diseases patient organizations to better promote and support patient-focused research.
RaDaR will serve as a living website. NCATS staff will continue to expand the content to include additional instructions, best practices, testimonials and shared resources from the rare diseases community in a phased approach.
Currently, NCATS is in the first phase of this process as outlined below, and the website focuses on the types of information collected by patient advocacy groups for their registries:
Phase 1: Contact and Demographic Information
- Using your registry to communicate and connect with researchers.
- Identify patients who are interested in participating in research studies.
- Describe the personal characteristics of participants in your registry.
- Contact participants to inform them about new studies.
Phase 2: Patient Experience Data and Patient-Reported Outcomes
- Discover trends and common needs of participants.
Phase 3: Natural History and Clinical Trial Data
- Improve scientific understanding of the disease.
- Build the foundation for therapy development with your disease.
This website is an educational platform based on the NCATS Toolkit for Patient-Focused Therapy Development. You can find information and tools developed for and by patient groups in concert with their academic, government, industry and advocacy partners in order to create and maintain registries. Share your suggestions, resources, or tools today!