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The GRDR® Registry Model Common Data Elements (CDEs) - The GRDR® Registry Model Common Data Elements (CDEs)

- 12/2/15 - 1 form, 10 itemgroups, 76 items, 1 language

Itemgroups: Current Contact Information, Socio-Demographic, Diagnosis, Family History, Anthropometric, Patient reported outcome, Devices and Health services, Clinical Research Participation and Biospecimen, Contact and Communication Preferences, Administrative

The main goals of the GRDR (Global Rare Diseases Patient Registry and Data Repository) CDE (Common Data Elements) effort are to: 1) develop a set of CDEs to facilitate data collection for the GRDR in a standardized and meaningful manner; 2) assist organizations that have no patient registry to establish a registry and be able to share data with the GRDR or other databases; 3) facilitate harmonization among the many organizations collecting patient information. NIH has developed Model Registry CDEs (ORDR CDEs) for patient data entry to be used in any rare disease registry, including a subset of CDEs (GRDR CDEs) to collect only de-identified information for the GRDR data repository. ODM derived from: https://ncats.nih.gov/grdr Permission to publish granted by Yaffa Rubinstein.