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.
NCATS works closely with patient advocacy groups (PAGs) and other key stakeholders to better understand the needs of PAGs 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.
Yes. The success of RaDaR depends on stakeholders in the rare disease community sharing with others their experiences and challenges in creating registries. RaDaR values feedback – from novice users to experienced registry owners. Contact RaDaR using the online form below to share your stories, suggestions, successes, and challenges.
In the next phase, the RaDaR website will add content about how to transform a contact registry into a research 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.
Share Your Feedback and Tools
Please use this form to contact an Information Specialist for help in navigating the RaDaR website or to submit feedback to improve the website or suggest a new tool. You will receive an e-mail response within 30 business days. Thank you for helping us keep RaDaR up to date.