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Common Data Element (CDE) Resource Portal

Summary Table for NIH CDE Initiatives

This table lists summary information for NIH CDE Initiatives. More information on NIH CDE Initiatives: Subject Areas, Detailed Summaries.


Link to Homepage Link to CDEs Brief Summary Number of Elements Studies and Publications CDE Resource Contact
Standardized Asthma Outcomes for Clinical Research Asthma CDEs The standardized asthma outcomes for clinical research represent recommendations for core (required in future studies), supplemental (to be used according to study aims), and emerging (requiring validation and standardization) outcomes for 7 domains of asthma clinical research outcome measures. Subject Areas | More... 10 (adults), 25 (children) -- NHLBI, NIAID
Chronic Low Back Pain CDEs cLBP Recommended minimum dataset for research on chronic low back pain. Subject Areas | More... 40 -- NCCAM
Early Detection Research Program EDRN CDEs for use in describing samples and data collected as part of cancer biomarker research. Subject Areas | More... 1,600 Publications NCI
eyeGENE eyeGENE As part of eyeGENE, common data elements have been developed for collecting phenotypic data associated with more than 30 inherited ophthalmic diseases. Subject Areas | More... 200



Rare Diseases Registry Program (RaDaR) GRDR CDEs to facilitate standardized data collection into the GRDR and to assist organizations in establishing rare disease registries that contribute information to GRDR. Subject Areas | More... 75 Publications GRDR
Quality of Life Outcomes in Neurological Disorders Neuro-QOL A core set of quality-of-life questions that address chronic neurologic disorders, plus sets of supplemental questions specific to targeted diseases or subgroups of patients. Subject Areas | More... 500 Publications NINDS
NIDA Substance Abuse Electronic Health Record Data Elements NIDA EHR A set of brief screening and initial assessment tools for substance use disorders (SUDs) for use in general medical settings. Subject Areas | More...





NIH Toolbox for Assessment of Neurological and Behavioral Function NIH Toolbox An integrated set of tools for measuring cognitive, emotional, motor and sensory function. Subject Areas | More... 4 batteries of tests, each with 5-24 tests Publications NIH

NINDS Common Data Elements

NINDS CDEs A core set of data elements for use in NINDS-funded studies, including core and supplementary sets of data elements for use in disease-specific studies. Subject AreasMore... 10,000 unique variables, 550+ instruments Studies NINDS
Consensus Measures for Phenotypes and eXposures PhenX Standard measures related to complex diseases, phenotypic traits and environmental exposures for inclusion in genome-wide association studies (GWAS) and other large-scale genomic and epidemiologic research efforts. Subject Areas | More... 23,000+ variables, 689 protocols -- --
Patient Reported Outcomes Measurement Information System PROMIS A system of item banks measuring patient-reported health status for various domains of physical, mental, and social health across clinical populations (i.e. not disease-specific). Subject Areas | More... 50 item banks Publications NIAMS

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Last Reviewed: April 20, 2020