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 | Subject Area | Number of Elements | CDE Resource Contact |
|---|---|---|---|---|---|
| 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... |
24 |
|
| 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 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... | 7,000+ variables, 100s of 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 |
