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 Brief Pain Inventory (BPI) pain severity questions assess the severity of the participants pain in the past 24 hours. Korean
  • All Core
  • Adult Chronic
  • Adult Acute
  • Pediatrics
Pain Intensity
The World Health Organization Disability Assessment Schedule (WHODAS 2.0) measures health and disability across cultures. English
  • Supplemental
Disability
The Brief Pain Inventory (BPI) pain severity questions assess the severity of the participants pain in the past 24 hours. Japanese
  • All Core
  • Adult Chronic
  • Adult Acute
  • Pediatrics
Pain Intensity
The Brief Pain Inventory (BPI) pain severity questions assess the severity of the participants pain in the past 24 hours. Swedish
  • All Core
  • Adult Chronic
  • Adult Acute
  • Pediatrics
Pain Intensity
The Social Readjustment Rating Scale (SRRS) is an inventory of the most common life stressors. English
  • Supplemental
Stress
The Brief Pain Inventory (BPI) pain severity questions assess the severity of the participants pain in the past 24 hours. Simplified Chinese
  • All Core
  • Adult Chronic
  • Adult Acute
  • Pediatrics
Pain Intensity
The Brief Pain Inventory (BPI) pain severity questions assess the severity of the participants pain in the past 24 hours. Traditional Chinese
  • All Core
  • Adult Chronic
  • Adult Acute
  • Pediatrics
Pain Intensity
The Cognitive Emotion Regulation Questionnaire Positive Reappraisal (CERQ) has 36-items in total and consists of nine subscales referring to thoughts of putting the blame of what you have experienced on the environment or another person. English
  • Supplemental
Emotional Support
The PROMIS Sleep Disturbance Short Form assesses the pure domain of sleep disturbance in individuals age 18 and older. English
  • Supplemental
Sleep
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 Multidimensional Psychological Flexibility Inventory (MPFI) is effective in distinguishing psychological flexibility from distress. English
  • Supplemental
Psychosocial Impact
The PROMIS Cancer Emotional Distress Depression Item bank assesses despression in subjects who have or have had cancer. English
  • Supplemental
Cancer
The Children's Self-Efficacy Scale (CSES) - Parent Report was developed to mirror the child measure and was designed to measure how sure parents are of their child's ability to function when in pain. English
  • Supplemental
Self-Efficacy
The Penn Online Evaluation of Migraine (POEM) is a web-based, branching logic questionnaire for the automated classification of migraine. English
  • Supplemental
Headache/Migraine
The Children's Self-Efficacy Scale (CSES) - Child Report is a self-report tool that examines self-efficacy despite pain to assess normal functioning and well behavior. English
  • Supplemental
Self-Efficacy
The Opioid MME is the amount of milligrams of morphine an opioid dose is equal to when prescribed. Calculating MME accounts for differences in opioid drug type and strength. English
  • All Core
  • Adult Chronic
  • Adult Acute
Opioids
The Telehealth Usability Questionnaire (TUQ) is a comprehensive questionnaire that covers all usability factors of telehealth, including usefulness, ease of use, effectiveness, reliability, and satisfaction. English
  • Supplemental
Technology
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 World Health Organization Quality of Life (QOL) 2 item assesses quality of life and satisfaction of health. Spanish
  • All Core
  • Adult Chronic
  • Adult Acute
Quality of Life
The World Health Organization Quality of Life (QOL) 2 item assesses quality of life and satisfaction of health. English
  • All Core
  • Adult Chronic
  • Adult Acute
Quality of Life
The PROMIS Parent Proxy Bank v1.0 Pain Interference assesses the self-reported consequences of pain on relevant aspects of a person’s life, which includes the extent to which pain hinders engagement with social, cognitive, emotional, physical, and recreational activities. English
  • Supplemental
Pain Interference
The Snaith Hamilton Pleasure Scale assesses anhedonia based on respondents' "hedonic capacity" for experiencing pleasure. English
  • Supplemental
Emotional Support
The Personal Resource Questionnaire (PRQ 2000) contains 15 items to understand the level of perceived social support. English
  • Supplemental
Social Support
The PROMIS Pain Intensity 3a measures the severity of the pain, over the past 7 days. English
  • Supplemental
Pain Intensity
The Optimal Screening for Prediction of Referral and Outcome Yellow Flag (OSPRO-YF) is a multidimensional screening tool used to assess psychosocial factors in individuals with musculoskeletal pain. English
  • Supplemental
Pain Interference