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Rare Diseases Registry Program (RaDaR)

We provide easily accessible guidance to the rare diseases community on how to set up and maintain high-quality registries.

Rare Diseases Registry Program (RaDaR) Overview

RaDaR is an online resource website that provides patient groups with guidance on how to develop registries for rare diseases. Good-quality registries help support research programs and stimulate treatment development.

The RaDaR 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 to create and maintain registries.

RaDaR gives an overview of what to consider before starting a registry and step-by-step guidance and tools for setting up and managing a contact registry. RaDaR helps users learn how to collect, store and retrieve data. The website shows how to use legal, ethical and standardized methods to allow collaborative information sharing between rare disease families, researchers, health care professionals and industry. RaDaR tools can be used to demonstrate the importance of registries, publish and promote registry standards, start a registry, and use registry data to advance research.

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 Positions

  • 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.

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Last updated on April 19, 2024