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 Patient Health Questionnaire 9 (PHQ-9) measures the frequency of depressed mood and anhedonia over the past two weeks. English
  • All Core
  • Adult Chronic
  • Adult Acute
  • Pediatrics
  • Supplemental
Depression
The Patient Health Questionnaire 9 (PHQ-9) measures the frequency of depressed mood and anhedonia over the past two weeks. Spanish
  • All Core
  • Adult Chronic
  • Adult Acute
  • Pediatrics
  • Supplemental
Depression
The Patient Health Questionnaire 9 (PHQ-9) measures the frequency of depressed mood and anhedonia over the past two weeks. Swedish
  • All Core
  • Adult Chronic
  • Adult Acute
  • Pediatrics
  • Supplemental
Depression
The Pain Catastrophizing Scale 13 (PCS-13) measures the state of mind of a participant in pain that encompasses the different perspectives on worrying. English, Korean, Japanese, Simplified Chinese, Spanish, Swedish, Traditional Chinese
  • All Core
  • Adult Chronic
  • Adult Acute
  • Supplemental
Pain Catastrophizing
The Adolescent Sleep Wake Scale 10 (AWS-10) and Sleep pattern/duration items from the Children's Report of Sleep Patterns (CRSP) measures pediatric participants sleep behaviors and patterns. English
  • All Core
  • Pediatrics
Sleep
The Adolescent Sleep Wake Scale 10 (AWS-10) and Sleep pattern/duration items from the Children's Report of Sleep Patterns (CRSP) measures pediatric participants sleep behaviors and patterns. Spanish
  • All Core
  • Pediatrics
Sleep
The Brief Pain Inventory (BPI) pain interference questions assess the impact of pain on daily functions. English, Spanish
  • All Core
  • Pediatrics
Pain Interference
The Brief Pain Inventory (BPI) pain severity questions assess the severity of the participants pain in the past 7 days. English
  • All Core
  • Pediatrics
Pain Intensity
The Brief Pain Inventory (BPI) pain severity questions assess the severity of the participants pain in the past 7 days. Spanish
  • All Core
  • Pediatrics
Pain Intensity
The NIDA-Modified ASSIST is a self-report measurement to assess participants for risky substance use. English
  • All Core
  • Pediatrics
Substance Use
The NIDA-Modified ASSIST is a self-report measurement to assess participants for risky substance use. Spanish
  • All Core
  • Pediatrics
Substance Use
The Pain Catastrophizing Scale Child (PCS-C) measures the state of mind of a pediatric participant in pain that encompasses the different perspectives on worrying. English
  • All Core
  • Pediatrics
Pain Catastrophizing
The Pain Catastrophizing Scale Child (PCS-C) measures the state of mind of a pediatric participant in pain that encompasses the different perspectives on worrying. Spanish
  • All Core
  • Pediatrics
Pain Catastrophizing
The Pain Catastrophizing Scale Parent (PCS-P) measures the thoughts and feelings that parents may experience when their child is in pain. English
  • All Core
  • Pediatrics
Pain Catastrophizing