RaDaR, formerly known as the Global Rare Diseases Registry Data Repository (GRDR) program, aims to define best practices for patient registries. RaDaR also strives to identify and adopt standards to support high-quality registries for rare diseases therapeutics development. To achieve these aims, RaDaR staff will:
- Identify, develop and validate data standards, data collections and data sharing practices that can be used across the rare disease registry community;
- Develop best practices for building high-quality registries able to support therapeutics development; and
- Make these best practices and standards broadly available and easily accessible to the rare disease community.
Plans are currently in progress to develop a roadmap of how to proceed to reach these broad goals.
The GRDR registry program originally began in 2010 as a proof-of-concept project. RaDaR will build upon this knowledge base. The RaDaR website is under construction to reflect the program’s new focus and will be updated regularly as plans continue to evolve.
NCATS Rare Diseases Research Video
NCATS’ latest video features an overview of the Center’s robust rare diseases research programs, initiatives and resources. Narrated by Petra Kaufmann, M.D., M.Sc., former director of the NCATS Office of Rare Diseases Research, the goal is to increase awareness about NCATS’ work to address the unique struggles rare disease patients and their caregivers face.