NIH/NCATS/GRDR® Common Data Elements: A leading force for standardized data collection

Contemporary Clinical Trials
Yaffa R Rubinstein, Pamela McInnes

Abstract

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...Continue Reading

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Citations

Nov 11, 2016·Radiology·Daniel L Rubin, Charles E Kahn
Jun 24, 2017·Science China. Life Sciences·Jinmeng Jia, Tieliu Shi
Oct 28, 2017·BMC Research Notes·Heidi Eliana MateusPaul Laissue
Jun 18, 2016·Clinical Trials : Journal of the Society for Clinical Trials·Jerry SheehanMichael Huerta
Mar 16, 2017·Bundesgesundheitsblatt, Gesundheitsforschung, Gesundheitsschutz·Holger StorfFrank Ückert
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Sep 6, 2018·Intractable & Rare Diseases Research·Simin DerayehHamid Moghaddasi
Aug 11, 2020·F1000Research·Vivek NavaleMatthew McAuliffe
Oct 26, 2018·F1000Research·Vivek Navale, Matthew McAuliffe
Apr 24, 2019·Journal of Medical Internet Research·Hyeoneui KimRicky Taira
Nov 3, 2017·Interdisciplinary Sciences, Computational Life Sciences·Mingzhu Zhao, Dong-Qing Wei
May 20, 2020·Bundesgesundheitsblatt, Gesundheitsforschung, Gesundheitsschutz·Holger StorfUNKNOWN NAMSE-Register-Strategiegruppe
Jan 12, 2021·JAMIA Open·Yaffa R RubinsteinMelissa A Haendel
Apr 14, 2021·Orphanet Journal of Rare Diseases·Eva M M Hoytema van KonijnenburgClara D M van Karnebeek
Apr 8, 2020·ACS Pharmacology & Translational Science·Rachelle J Bienstock
Nov 3, 2021·Journal of the American Geriatrics Society·Ellen McCreedyJulie P W Bynum

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