Common Data Element: Race USA category
Listed below are the details for the data element.
1.5
Element Type
Common Data Element
Race USA category
RaceUSACat
Short Description
The subject self declared racial origination, independent of ethnic origination, using OMB approved categories.
Definition
The subject self declared racial origination, independent of ethnic origination, using OMB approved categories.
Biomedical Terminologies and Standards
Notes
Core CDEs from ONC SET OF DATA CLASSES TO SUPPORT NATIONWIDE INTEROPERABILITY
Creation Date
2018-01-30
Historical Notes
Race USA category
References
The NIH Guidelines on Inclusion of Women and Minorities as Subjects in Clinical Research: The Office of Management and Budget (OMB) Directive No. 15 defines the minimum standard of basic racial and ethnic categories. (http://grants.nih.gov/grants/funding/women_min/guidelines_update.htm) Collection of Race and Ethnicity Data in Clinical Trials (FDA, September 2005 - http://www.fda.gov/RegulatoryInformation/Guidances/ucm126340.htm) Jorde LB and Wooding SP. Genetic variation, classification and "race". Nature Genetics. 2004;36(11):S28-S33. Bhopal R and Donaldson L. White, European, Western, Caucasian, or What? Inappropriate labeling in Research on Race, Ethnicity, and Health. Amer J of Publ Health. 1998;88:1303-1307.
Data Type
Alphanumeric
Input Restrictions
Multiple Pre-Defined Values Selected
Pre-Defined Values
Population
Adult and Pediatric
Guidelines/Instructions
Choose all that apply. Response is obtained by report of the participant/subject or caretaker. Collecting information on race may not be allowed in some countries for concerns related to discrimination. In other countries, however, these concerns are considered a reason for recording race in order to guarantee equal access to care. Investigators receiving funding from the US National Institutes of Health (NIH) are required to report the number of subjects enrolled on an annual basis using the racial categories listed.The Office of Management and Budget (OMB) Directive No. 15 (revised from 200) defines the minimum standard of basic racial and ethnic categories - https://nces.ed.gov/programs/handbook/data/pdf/Appendix_A.pdf). Final Guidance on Maintaining, Collecting and Reporting Racial and Ethnic Data to the U.S. Department of Education is available from the USED at the Federal Register web site at http://edocket.access.gpo.gov/2007/E7-20613.htm.
Preferred Question Text
What is the subject's race (as defined by OMB)?
Category Groups and Classifications
Disease | Domain | Sub-Domain |
---|---|---|
Epilepsy | Participant/Subject Characteristics | Demographics |
Stroke | Participant/Subject Characteristics | Demographics |
Spinal Muscular Atrophy | Participant/Subject Characteristics | Demographics |
Headache | Participant/Subject Characteristics | Demographics |
Myasthenia Gravis | Participant/Subject Characteristics | Demographics |
Neuromuscular Diseases | Participant/Subject Characteristics | Demographics |
Multiple Sclerosis | Participant/Subject Characteristics | Demographics |
Friedreich's Ataxia | Participant/Subject Characteristics | Demographics |
General (For all diseases) | Participant/Subject Characteristics | Demographics |
Traumatic Brain Injury | Participant/Subject Characteristics | Demographics |
Classification
General (For all diseases)
:
Core
Stroke
:
Core
Spinal Muscular Atrophy
:
Core
Concussion/Mild TBI
:
Core
Multiple Sclerosis
:
Core
Epidemiology
:
Core
Headache
:
Core
Myasthenia Gravis
:
Core
Friedreich's Ataxia
:
Exploratory
Acute Hospitalized
:
Core
Epilepsy
:
Core
Neuromuscular Diseases
:
Core
Moderate/Severe TBI: Rehabilitation
:
Core
Keywords
COVID19
Labels
Effective Date
Until Date
Last Change Date
Thu Jul 15 11:38:41 EDT 2021
See Also
RaceCat;RaceExpndCatPDBP;RaceUSAMatrnlCat;RaceUSAPatrnlCat
Submitting Organization Name
NIH/NINDS
Submitting Contact Name
NINDSCDE
Submitting Contact Information
NINDSCDE@emmes.com
Steward Organization
Name
NIH/NINDS
Steward Contact Name
NINDSCDE
Steward Contact Information
NINDSCDE@emmes.com
NINDS ID