Common Data Elements (CDEs) Repository

The NIH HEAL Initiative’s Common Data Elements (CDEs) program aims to harmonize the data collected by the initiative’s studies, enhancing the comparability of various data sets generated by HEAL research.  

HEAL researchers and potential applicants conducting research with human participants should also prioritize using the HEAL CDEs. Researchers outside the HEAL Initiative conducting pain research may also be interested in using validated and structured questionnaires.

The 'core' questionnaires in ten domains, demographic information, and opioid usage are required for the human subjects in pain HEAL grants and are organized depending on the type of pain and population being studied.

Most HEAL pain studies would fall into one of several categories that would determine their core questionnaires: adult acute pain, adult chronic pain, or pediatric pain (both acute and chronic pain). These categories are listed in the “core or supplemental” column.

The “Advanced Search” function can filter the questionnaires by the specific type of pain research being conducted (acute vs. chronic), the patient population (adult vs. pediatric), and the domain (research topic) of the questionnaires.

For core questionnaires with multiple versions listed (e.g., GAD-2, GAD-7), studies can use any one of these versions, but at a minimum must use the shortest version listed.

The text box allows users to search for a specific questionnaire or research topic area.

Files can be downloaded directly from the links in the second column. Filenames that include the suffix “CRF” are questionnaires (case-report forms) and filenames with the suffix “CDE” are the CDE files with variable names and coding information.

To download more than one file at a time, use the checkboxes on the left hand side to select the files you would like to download. After you click the "Download Selected Files" button, you will get a message at the top of the page saying, "Export file created, Click here to download." This will download a zipped folder with your selections.

“Download list” allows users to download the list of questionnaires that are displayed as search results.

For questionnaires that are copyrighted and require a license for use, the files linked below contain instructions on how to properly obtain a license for use.

If you have any questions, please contact [email protected].

No items
Description File Name File Language Core or Supplemental Research Topic
The Structured Clinical Interview for DSM-5 Research Version (SCID-RV) is a semi structured interview guide for making the major DSM-5 diagnoses. English
  • Supplemental
Behavioral health
The Spinal Cord Independence Measure (SCIM) assesses traumatic and non-traumatic, acute and chronic spinal cord injury (SCI). English
  • Supplemental
Spinal Cord
The Self-Administered Comorbidity Questionnaire (SCQ) assesses comorbid conditions in clinical and health services research. English
  • Supplemental
General Health Measures
The Self-Compassion Scale - Short Form (SCS-SF) is a 12-item self-report measure used by adults to measure their capacity for self-compassion (the ability to hold one's feelings of suffering with a sense of warmth, connection and concern). English
  • Supplemental
Protective Factors
The Self-Compassion Scale - Short Form (SCS-SF) is a 12-item self-report measure used by adults to measure their capacity for self-compassion (the ability to hold one's feelings of suffering with a sense of warmth, connection and concern). Spanish
  • Supplemental
Protective Factors
The SF 8 Health Survey instrument measures health-related quality of life over the past 4 weeks. English
  • Supplemental
Quality of Life
The Health Survey (SF-12v2) is a self-reported outcome measure assessing the impact of health on an individual's everyday life. It is often used as a quality of life measure. English, Spanish
  • Supplemental
General Health Measures
The Short Physical Performance Battery (SPPB) is an objective measurement instrument of balance, lower extremity strength, and functional capacity in older adults. English
  • Supplemental
Physical Functioning
The Sickle Cell Self-Efficacy Scale (SCSES) is comprised of nine questions relating to participants' perceptions of their ability to function on a day-to-day basis and to manage SCD symptomatology (e.g. episodes of pain). English
  • Supplemental
Sickle Cell
The Six-Item Screener is a brief instrument for identifying subjects with cognitive impairment and its diagnostic properties are comparable to the full Mini Mental State Examination (MMSE). English
  • Supplemental
Cognitive Function
The Snaith Hamilton Pleasure Scale assesses anhedonia based on respondents' "hedonic capacity" for experiencing pleasure. English
  • Supplemental
Emotional Support
The Social Network Index (SNI) assesses participation in 12 types of social relationships. These include relationships with a spouse, parents, parents-in-law, children, other close family members, close neighbours, friends, workmates, schoolmates, fellow volunteers, members of groups without religious affiliation, and religious groups. English
  • Supplemental
Social Support
The Screener and Opioid Assessment for Patients with Pain- Revised (SOAPP-R) evaluates a patient's relative risk for developing problems when placed on long-term opioid therapy. English
  • Supplemental
Opioids
The Stages of Change Readiness and Treatment Eagerness Scale (SOCRATES) to assess motivation for change in problem drinkers. English
  • Supplemental
Substance Use
The Subjective Opiate Withdrawal Scale (SOWS) is self-administered rating scale to measure the signs and symptoms of opiate withdrawal. English
  • Supplemental
Opioids
The Social Support and Pain Questionnaire (SPQ) assess the influence of social support in subjects with various types of pain. English
  • Supplemental
Social Support
The Social Readjustment Rating Scale (SRRS) is an inventory of the most common life stressors. English
  • Supplemental
Stress
The Spielberger State-Trait Anxiety Inventory (STAI) measures the state and trait components of anxiety. English, Spanish
  • Supplemental
Anxiety
The Tobacco, Alcohol, Prescription medication, and other Substance Use 2 (TAPS 2) identifies specific substance(s) use and risk level, ranging in severity from problem use to the more severe substance use disorder. English
  • Supplemental
Substance Use
The Tobacco, Alcohol, Prescription medication, and other Substance Use 2 (TAPS 2) identifies specific substance(s) use and risk level, ranging in severity from problem use to the more severe substance use disorder. Spanish
  • Supplemental
Substance Use
The Treatment Evaluation Inventory Modified (TEI) assesses parents' acceptance of procedures for behavior problem children. English
  • Supplemental
Global Satisfaction with Treatment
The Trauma History Questionnaire (THQ) is a 24 item self-report measure that examines experiences with potentially traumatic events such as crime, general disaster, and sexual and physical assault using a yes/no format. English
  • Supplemental
Trauma/PTSD
The Telephone Interview for Cognitive Status (TICS) 5 is a global mental status test that can either be administered over the telephone or face-to-face. English
  • Supplemental
Technology
The Timeline Follow Back (TLFB) is used as a clinical and research tool to obtain a variety of quantitative estimates of marijuana, cigarette, and other drug use over a 7-day period. English
  • Supplemental
Substance Use
The Timeline Follow Back (TLFB) 90 days is used as a clinical and research tool to obtain a variety of quantitative estimates of marijuana, cigarette, and other drug use over a 90-day period. English
  • Supplemental
Substance Use