Introduction:The goal of the NIH/NCATS Global Rare Diseases Patient Registry Data Repository (GRDRSM) program is to create a global webbased data repository that will integrate coded patient information and clinical data to be available to investigators to conduct various biomedical studies and clinical research.Data from rare disease registries is integrated in a standardized manner using the GRDR Common Data Elements (CDEs) and nationally accepted standards and standard terminologies.The GRDRSM program will advance research for many rare diseases and could apply to common diseases as well.In addition,the GRDR program provides the rare disease community with useful tools and services: a set of CDEs,an informed consent template,GRDR GUID software,a central GRDR IRB,a template patient registry,and the ability to link patient data to biospecimens.Background: The GRDRSM program followed a 2-year proof of concept pilot project testing the challenges involved in adopting the GRDRSM Common Data Elements (CDEs) while establishing 12 new patient registries and mapping of data from existing registries.During the pilot project the rare diseases community has accepted the importance of using CDEs and standard vocabularies and terminologies.Based on the lessons learned from the GRDRSM pilot project NCATS launched the first phase of the GRDRSM program.Current state of the GRDRSM program: Data from seven rare disease registries representing 75 diseases,51 countries and 7600 patients,are being mapped to the GRDR CDEs and to national standards and integrated into the GRDR repository to be available for various biomedical studies.The GRDRSM program continues to work with and assists patient advocacy groups to establish their patient registry and provide them with the necessary tools and information.Future plan: We plan to develop a GRDRSM program that will: advance research for many rare diseases and may also apply to common diseases;establish Public Private Partnerships;increase the number of rare diseases represented;integrate data from Electronic Health Records;develop standards for specific rare diseases;continue to develop additional tools and resources for the rare diseases community;and link to other rare diseases databases.Together with health care providers,patients and their families,patient advocacy groups,the pharmaceutical industry,and rare diseases researchers,we anticipate developing a robust and valuable GRDRSM program.