The standards and innovations available from this page have been provided from other organizations because these standards are relevant to CDISC stakeholders.
NIH's Office of Rare Diseases Global Rare Diseases Patient Registry (GRDR) Common Data Elements (CDE) Version 2 Now Available
Earlier this year, CDISC posted a request for review of the GRDR CDEs. The CDEs have now been updated based on the review comments and Version 2 is available for download from the link below.
The Office of Rare Diseases Research (ORDR), within the National Institutes of Health (NIH), is publishing Version 2 of the list of common data elements (CDEs) for patient data entry to be used in any rare disease registry in conjunction with the Global Rare Diseases Patient Registry (GRDR) being developed through the ORDR. CDEs are necessary to ensure that data are defined in the same way and use the same standards and vocabularies. The use of CDEs facilitates the standardization of data entry and allows for harmonization of sharing and exchange of information across registries, various analyses and studies of specific rare diseases.
The GRDR CDE list and information about the GRDR and CDEs are available here.
For more information, please contact Dr. Yaffa Rubenstein at firstname.lastname@example.org.