The Rare Diseases Registry Program (RaDaR) of the National Center for Advancing Translational Sciences (NCATS) provides guidance for setting up and maintaining high-quality registries that are based on best practices and data standards. The ultimate goal is to support the collection of patient data that can be used in developing treatments for rare diseases.
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.
RaDaR gives you 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 you learn how to collect, store, and retrieve data. The website shows you how to use legal, ethical, and standardized methods to enable collaborative information sharing between rare disease families, researchers, healthcare professionals, and industry.
RaDaR tools can be used to demonstrate the importance of registries, to publish and promote registry standards, to start a registry, and to use registry data to advance research. RaDaR is not involved in collecting or storing patient data. Each PAG needs to assess their own needs and decide on the registry platform that best suits their goals.
NCATS works closely with patient groups and other key stakeholders to better understand the needs of patient groups interested in starting and maintaining a registry. NCATS uses the knowledge gained from the experiences and challenges of these individuals to develop and identify content for the RaDaR website.
The success of RaDaR depends on users sharing with others their experiences in building and using registries so that all stakeholders in the rare disease community can benefit. RaDaR values feedback – from novice users to experienced registry owners. Contact RaDaR using the form below to share your stories, suggestions, successes, and challenges.
In the next phase, the RaDaR website will add content about how to evolve your registry. RaDaR will provide information about best practices involved in collecting additional details from patients, such as medical information, and encouraging collaboration among researchers.
RaDaR was built on the foundation laid by the Global Rare Diseases Patient Registry (GRDR). GRDR was created in 2010 and retired in 2017 and led to the development of software to generate global unique identifiers (GUIDs) and common data elements (CDEs). NCATS decided to broaden its reach to inform registry building across the larger rare disease community to focus on:
- Identifying best practices and tools to assist in creating high-quality registries that support therapeutics development.
- Developing data standards that can be used across the rare disease community.
- Encourage data sharing.
Request Assistance or Submit Resources
You can use the contact form for the Genetic and Rare Diseases (GARD) Information Center to reach an Information Specialist if you need help navigating RaDaR. You can also suggest the addition of a resource your group found helpful. Or you may wish to share resources your group developed, such as a meeting agenda template or a checklist for reviewing clinical trials to post on your website. Thank you in advance for helping us keep RaDaR up-to-date.