An official website of the United States government
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.
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Our Impact on Rare Diseases
We are committed to speeding the development of treatments for patients with rare disease and engaging patients and advocates as essential partners.
Clinical Research Toolbox
We support innovation in new technologies and other clinical and translational approaches that may greatly accelerate the process of transforming laboratory discoveries into new treatments for patients.
Rare Diseases Clinical Research Network
We oversee this NIH-wide program that supports medical research on over 200 rare diseases through clinical studies, including collaborations, study enrollment and data sharing.
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.