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 PROMIS Emotional Support 8a measures feelings of being cared for and having confident relationships. Spanish
  • Supplemental
Emotional Support
The PROMIS Fatigue 13a assesses a range of self-reported fatigue symptoms. English
  • Supplemental
Fatigue
The PROMIS Fatigue 4a assesses a range of self-reported fatigue symptoms. English
  • Supplemental
Fatigue
The PROMIS Fatigue 4a assesses a range of self-reported fatigue symptoms. Spanish
  • Supplemental
Fatigue
The PROMIS Fatigue 6a assesses a range of self-reported fatigue symptoms. English
  • Supplemental
Fatigue
The PROMIS Fatigue 6a assesses a range of self-reported fatigue symptoms. Spanish
  • Supplemental
Fatigue
The PROMIS Fatigue 7a assesses a range of self-reported fatigue symptoms. English
  • Supplemental
Fatigue
The PROMIS Fatigue 7a assesses a range of self-reported fatigue symptoms. Spanish
  • Supplemental
Fatigue
The PROMIS Fatigue 7b assesses a range of self-reported fatigue symptoms. English
  • Supplemental
Fatigue
The PROMIS Fatigue 7b assesses a range of self-reported fatigue symptoms. Spanish
  • Supplemental
Fatigue
The PROMIS Fatigue 8a assesses a range of self-reported fatigue symptoms. English
  • Supplemental
Fatigue
The PROMIS Gastrointestinal Constipation Scale assesses the frequency and intensity of incomplete evacuation, rectal pain, straining, and hard stools, as well as the need for manual extraction of stool. English
  • Supplemental
Gastrointestinal
The PROMIS General Self-Efficacy 4a is a 4 item, self-report measure assessing the confidence of a person's self-efficacy. English
  • Supplemental
Self-Efficacy
The PROMIS Global Health is a 10-item questionnaire that evaluates the patient's physical, mental, and social aspects of health. English
  • Supplemental
General Health Measures
The PROMIS Global Health is a 10-item questionnaire that evaluates the patient's physical, mental, and social aspects of health. Spanish
  • Supplemental
General Health Measures
The PROMIS Instrumental Support 6a is a self-reported measure to assess assistance with material, cognitive or task performance. English
  • Supplemental
Physical Functioning
The PROMIS Instrumental Support 6a is a self-reported measure to assess assistance with material, cognitive or task performance. Spanish
  • Supplemental
Physical Functioning
The PROMIS Instrumental Support 8a is a self-reported measure to assess assistance with material, cognitive or task performance. English
  • Supplemental
Physical Functioning
The PROMIS Instrumental Support 8a is a self-reported measure to assess assistance with material, cognitive or task performance. Spanish
  • Supplemental
Physical Functioning
The PROMIS Mobility Item Bank is an item bank to assess a dimension of physical functioning. English
  • Supplemental
Physical Functioning
The PROMIS Neuropathic Pain Quality 5a is a self-administered questionnaire for individuals aged 18 years and older, assessing 5 descriptors of neuropathic pain quality, with a recall period of the past 7 days. English
  • Supplemental
Neuropathic Pain
The PROMIS Nociceptive Pain Quality 5a is a self-administered questionnaire assessing 5 descriptors of nociceptive pain quality, with a recall period of the past 7 days. English
  • Supplemental
Nociceptive Pain
The PROMIS Item Bank v1.0 Pain Behavior measures self-reported external manifestations of pain. English
  • Supplemental
Pain Behavior
The PROMIS Item Bank v2.0 Pain Behavior measures self-reported external manifestations of pain. English
  • Supplemental
Pain Behavior
The PROMIS Parent Proxy Pain Behavior is a parent report measure that assesses behaviors that typically indicate to others that a child is experiencing pain. English
  • Supplemental
Pain Behavior