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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 HomepageLink to CDEsBrief SummarySubject AreaNumber of ElementsCDE 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. More... Asthma. More... 10 (adults), 25 (children) NHLBI, NIAID
Chronic Low Back Pain CDEs cLBP Recommended minimum dataset for research on chronic low back pain. More... Chronic low back pain. More... 40 NCCAM
Early Detection Research Program EDRN CDEs for use in describing samples and data collected as part of cancer biomarker research. More... Cancer. More... 1,600 NCI
National Ophthalmic Disease Genotyping Network eyeGENE As part of eyeGENE, common data elements have been developed for collecting phenotypic data associated with more than 30 inherited ophthalmic diseases. More... Ophthalmology. More... 300+ NEI
Global Rare Diseases Patient Registry and Data Repository GRDR CDEs to facilitate standardized data collection into the GRDR and to assist organizations in establishing rare disease registries that contribute information to GRDR. More... Rare diseases. More... 70 ORDR
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. More... Neurological disorders. More... 500 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. More...

Substance Use Disorders. 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. More... Cognitive, emotional, motor, and sensory function. More... 4 batteries of tests, each with 5-24 tests 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. More... Neurological disorders. More... 10,000 unique variables, 550+ instruments 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. More... Genome-wide association studies. More... 15,000+ variables, 428 protocols NHGRI
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). More... Physical, mental, and social health. More... 50 item banks NIAMS


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