FDF Selected for Continued Participation in the NIH GRDR Program

GRDR stands for Global Rare Diseases Patient Registry Data Repository.

Based on the lessons learned from the National Institutes of Health Pilot Project, NCATS is moving forward with next steps to develop The NIH/NCATS GRDRSM Program to develop a range of tools and resources. The NIH/NCATS GRDRSM Program is designed to advance research for many rare diseases and apply the insights gained to common diseases as well.

The program aim is to develop a Web-based resource that aggregates, secures and stores de-identified patient information from many different registries for rare diseases, all in one place. The ultimate goal is to improve drug and therapeutics development and the quality of life for the many millions of people who are suffering from rare diseases by providing access to standardized information about multiple rare diseases through one central resource.

The FDF has had a long standing relationship with the program including service on the GRDRSM Steering Committee. Plans to contribute data from the FD/MAS patient registry are underway. To find out more about the FD/MAS patient registry please visit: http://www.fibrousdysplasiaregistry.com/