| URL: | https://grdr.ncats.nih.gov/index |
| Full name: | Rare Diseases Registry Program |
| Description: | 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. |
| Year founded: | 2015 |
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| Accessibility: |
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| Country/Region: | United States |
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| University/Institution: | National Center for Advancing Translational Sciences |
| Address: | National Center for Advancing Translational Sciences (NCATS), National Institutes of Health |
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| Country/Region: | United States |
| Contact name (PI/Team): | Yaffa R. Rubinstein |
| Contact email (PI/Helpdesk): | eric.sid@nih.gov |
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NIH/NCATS/GRDR® Common Data Elements: A leading force for standardized data collection. [PMID: 25797358]
The main goal of the NIH/NCATS GRDR® program is to serve as a central web-based global data repository to integrate de-identified patient clinical data from rare disease registries, and other data sources, in a standardized manner, to be available to researchers for conducting various biomedical studies, including clinical trials and to support analyses within and across diseases. The aim of the program is to advance research for many rare diseases. One of the first tasks toward achieving this goal was the development of a set of Common Data Elements (CDEs), which are controlled terminologies that represent collected data. A list of 75 CDEs was developed by a national committee and was validated and implemented during a period of 2 year proof of concept. Access to GRDR CDEs is freely available at: https://grdr.ncats.nih.gov/index.php?option=com_content&view=article&id=3&Itemid=5. The GRDR CDEs have been the cornerstone of the GRDR repository, as well as of several other national and international patient registries. The establishment of the GRDR program has elevated the issue of data standardization and interoperability for rare disease patient registries, to international attention, resulting in a global dialog and significant change in the mindset of registry developers, patient advocacy groups, and other national and international organizations. |