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].

Reset
Download List
No items
Description File Name File Language Core or Supplemental Research Topic
The PROMIS Pediatric Item Bank v2.0 Pain Behavior measures self-reported external manifestations of pain in children. English
  • Supplemental
 Pain Behavior
The PROMIS Pain Intensity 1a measures the severity of pain over the past 7 days. English
  • Supplemental
 Pain Intensity
The PROMIS Pain Intensity 3a measures the severity of the pain, over the past 7 days. English
  • Supplemental
 Pain Intensity
The PROMIS Pain Interference SF 4a is a self-reported measure that assesses how pain interferes with one's daily life activities. English
  • Supplemental
 Pain Interference
The PROMIS Pain Interference SF 6a is a self-reported measure that assesses how pain interferes with one's daily life activities. English
  • Supplemental
 Pain Interference
The PROMIS Pain Interference SF 8a is a self-reported measure that assesses how pain interferes with ones daily life activites. English
  • Supplemental
 Pain Interference
The PROMIS Pain Interference Computerized Adaptive Test (CAT) consists of 40 items that measur the self-reported consequences of pain on relevant aspects of a person's life and includes the extent to which pain hinders engagement with social, cognitive, emotional, physical, and recreational activities. English
  • Supplemental
 Pain Interference
The PROMIS Pain Interference Computerized Adaptive Test (CAT) consists of 40 items that measur the self-reported consequences of pain on relevant aspects of a person's life and includes the extent to which pain hinders engagement with social, cognitive, emotional, physical, and recreational activities. Spanish
  • Supplemental
 Pain Interference
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 PROMIS Pediatric Anxiety SF 8a is a self-report measure to assess a child's anxiety level over the past 7 days. English
  • Supplemental
 Anxiety
The PROMIS Pediatric Anxiety SF 8a, is a self-report measure to assess a child's anxiety level over the past 7 days. Spanish
  • Supplemental
 Anxiety
The PROMIS Pediatric Depressive Symptoms 8a assesses the depression, in a pediatric population. English
  • Supplemental
 Depression
The PROMIS Pediatric Depressive Symptoms 8a assesses the depression, in a pediatric population. Spanish
  • Supplemental
 Depression
The PROMIS Pediatric Fatigue 10a assesses a range of self-reported fatigue symptoms in the pediatric population. English
  • Supplemental
 Fatigue
The PROMIS Pediatric Fatigue 10a assesses a range of self-reported fatigue symptoms in the pediatric population. Spanish
  • Supplemental
 Fatigue
The PROMIS Pediatric Global Health measure is a brief and reliable 7-item summary assessment of a child's self-reported health. English
  • Supplemental
 General Health Measures
The PROMIS Pediatric Global Health measure is a brief and reliable 7-item summary assessment of a child's self-reported health. Spanish
  • Supplemental
 General Health Measures
The PROMIS Pediatric Mobility 8a is a scale to assess a dimension of physical functioning, in the pediatric population. English
  • Supplemental
 Physical Functioning
The PROMIS Pain Intensity 1a measures the severity of pain over the past 7 days in the pediatric population. English
  • Supplemental
 Pain Intensity
The PROMIS Pediatric Bank Pain Interference is a self-reported measure that assesses how pain interferes with one's daily life activities. English
  • Supplemental
 Pain Interference
The PROMIS Pediatric Pain Quality Sensory SF 8a is a self-administered pain quality survey for 8 to 17 year olds, assessing 8 descriptors of sensory pain quality, across 5 severity anchors, with a recall period of the past 7 days. English
  • Supplemental
 Pain Quality
The PROMIS Pediatric Peer Relationships SF 8a assesses self-reported quality of relationships with friends and other acquaintances, in the pediatric population. English
  • Supplemental
 Social Support
The PROMIS Pediatric Peer Relationships SF 8a assesses self-reported quality of relationships with friends and other acquaintances, in the pediatric population. Spanish
  • Supplemental
 Social Support
The PROMIS Pediatric Sleep-Related Impairment 8a assesses sleep-related impairment over the past seven days, in the pediatric population. English
  • Supplemental
 Sleep
The PROMIS Pediatric Upper Extremity 8a assesses a dimension of physical functioning, upper extremity, in a pediatric population. English
  • Supplemental
 Biomechanics