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].

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Description File Name File Language Core or Supplemental Research Topic
The Pain Anxiety Symptoms Scale (PASS) evaluates pain anxiety, which leads to avoidance of daily activities and normal movements. English
  • Supplemental
 Anxiety
The Post Hospitalization Behavior Questionnaire (PHBQ) assesses children's post-hospitalization and postoperative new-onset behavioral changes. English
  • Supplemental
 Coping with pain
The Post Hospitalization Behavior Questionnaire (PHBQ) assesses children's post-hospitalization and postoperative new-onset behavioral changes. Spanish
  • Supplemental
 Coping with pain
The Primary Care PTSD Screen for DSM 5 (PC PTSD 5) is a 5-item screen that was designed to identify individuals with probable PTSD in primary care settings. English
  • Supplemental
 Trauma/PTSD
The PTSD Checklist for DSM 5 (PCL 5) is a 20-item self-report measure that assesses the 20 DSM-5 symptoms of PTSD. English
  • Supplemental
 Trauma/PTSD
The Pubertal Developmental Scale (PDS) is a self-report measure, which assesses pubertal development derived from physical examination. English
  • Supplemental
 Developmental Measure
The PedsQL Sickle Cell Disease Child Report ages 5-7 Module is a brief, valid, reliable self- or proxy-administered questionnaire that captures health-related quality of life (HRQOL) in pediatric patients with sickle cell disease. English
  • Supplemental
 Sickle Cell
The PedsQL Sickle Cell Disease Child Report ages 8-12 Module is a brief, valid, reliable self- or proxy-administered questionnaire that captures health-related quality of life (HRQOL) in pediatric patients with sickle cell disease. English
  • Supplemental
 Sickle Cell
The PedsQL Sickle Cell Disease Infant age 1-12 months Module is a brief, valid, reliable self- or proxy-administered questionnaire that captures health-related quality of life (HRQOL) in pediatric patients with sickle cell disease. English
  • Supplemental
 Sickle Cell
The PedsQL Sickle Cell Disease Infant ages 13-24 months Module is a brief, valid, reliable self- or proxy-administered questionnaire that captures health-related quality of life (HRQOL) in pediatric patients with sickle cell disease. English
  • Supplemental
 Sickle Cell
The PedsQL Sickle Cell Disease Parent Report ages 13-18 Module is a brief, valid, reliable self- or proxy-administered questionnaire that captures health-related quality of life (HRQOL) in pediatric patients with sickle cell disease. English
  • Supplemental
 Sickle Cell
The PedsQL Sickle Cell Disease Parent Report ages 2-4 Module is a brief, valid, reliable self- or proxy-administered questionnaire that captures health-related quality of life (HRQOL) in pediatric patients with sickle cell disease. English
  • Supplemental
 Sickle Cell
The PedsQL Sickle Cell Disease Parent Report ages 5-7 Module is a brief, valid, reliable self- or proxy-administered questionnaire that captures health-related quality of life (HRQOL) in pediatric patients with sickle cell disease. English
  • Supplemental
 Sickle Cell
The PedsQL Sickle Cell Disease Parent Report ages 8-12 Module is a brief, valid, reliable self- or proxy-administered questionnaire that captures health-related quality of life (HRQOL) in pediatric patients with sickle cell disease. English
  • Supplemental
 Sickle Cell
The PedsQL Sickle Cell Disease Teen Report Module is a brief, valid, reliable self- or proxy-administered questionnaire that captures health-related quality of life (HRQOL) in pediatric patients with sickle cell disease. English
  • Supplemental
 Sickle Cell
The Pediatric Glasgow Coma Score (PGCS) measures the severity of traumatic brain injury in a pediatric population. English
  • Supplemental
 Coma
The Patient Health Questionnaire 4 (PHQ 4) is an ultra-brief measurement of core symptoms/signs of depression and anxiety by combining the two-item measure (PHQ 2), consisting of core criteria for depression, as well as a two-item measure for anxiety (GAD 2). English
  • Supplemental
 Depression
The Patient Health Questionnaire 4 (PHQ 4) is an ultra-brief measurement of core symptoms/signs of depression and anxiety by combining the two-item measure (PHQ 2), consisting of core criteria for depression, as well as a two-item measure for anxiety (GAD 2). Spanish
  • Supplemental
 Depression