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 clinical 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 Pain Catastrophizing Scale Parent (PCS-P) measures the thoughts and feelings that parents may experience when their child is in pain. Spanish
  • All Core
  • Pediatrics
Pain Catastrophizing
The Pediatric Demographics are a set of demographic questions to gain background information on pediatric participants. English
  • All Core
  • Pediatrics
Demographics
The Pediatric Demographics are a set of demographic questions to gain background information on pediatric participants. Spanish
  • All Core
  • Pediatrics
Demographics
The PedsQL Inventory measures the health-related quality of life (HRQOL) in healthy children and adolescents and those with acute and chronic health conditions. English, Spanish
  • All Core
  • Pediatrics
Physical Functioning
The Patient Global Impression of Severity (PGIS) measures the severity of a specific condition (a single-state scale). English
  • All Core
  • Pediatrics
Global Satisfaction with Treatment
The Patient Global Impression of Severity (PGIS) measures the severity of a specific condition (a single-state scale). Spanish
  • All Core
  • Pediatrics
Global Satisfaction with Treatment
The 2 Minute Walk Test is a measure of self-paced walking ability and functional capacity. English
  • Supplemental
Biomechanics
The 30 Second Chair Stand Assessment tests leg strength and endurance in older adults. English
  • Supplemental
Physical Functioning
The 6 Minute Walk Test is a sub-maximal exercise test used to assess aerobic capacity and endurance. English
  • Supplemental
Biomechanics
The Acceptance and action questionnaire (AAQ-SA) is an instrument to assess experiential avoidance and psychological inflexibility to substance misuse. English
  • Supplemental
Substance Use
The Addiction Behaviors Checklist (ABC) tracks behavior characteristics of addiction related to prescription opioid medications in chronic pain. English
  • Supplemental
Substance Use
The Altarum Consumer Engagement (ACE) survey tool measures three domains (commitment, informed choice, navigation) of patient engagement. English, Spanish
  • Supplemental
Protective Factors
The Adverse Childhood Experiences (ACEs) Questionnaire is a 10-item measure used to measure childhood trauma. English
  • Supplemental
Trauma/PTSD
The Adverse Childhood Experiences (ACEs) Questionnaire is a 10-item measure used to measure childhood trauma. Spanish
  • Supplemental
Trauma/PTSD