The GRDR program goal is to build a Web-based resource that integrates, secures and stores de-identified patient information from many different registries for rare diseases, all in one place. To accomplish these goals and to better serve the rare diseases community, NCATS collaborates with organizations including RD-Connect, IRDiRC and Orphanet.
The ultimate goal of the program is to provide a “one-stop shop” for rare disease data from registries across the world. Through the program, NCATS will give patients, health care professionals and researchers access to information about multiple rare diseases through one central resource. Studies fueled by GRDR data could lead to improved therapeutic development and quality of life for the many millions of people who have rare diseases.
In addition to building the repository, GRDR program staff aim to create a number of related tools and resources. These could include developing a GRDR program data model; an institutional review board; and additional common data elements, data policies, informed consent templates and patient registry template software. Learn more about available program resources.