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 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
The Patient Health Questionnaire Modified for Adolescents (PHQ A | PHQ M) is a self-report questionnaire that is designed for the purpose of assessing anxiety, mood, eating, and substance use disorders among adolescent primary care patients. English
  • Supplemental
 Depression
The Patient Health Questionnaire 8 (PHQ-8) 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 8 (PHQ-8) 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 8 (PHQ-8) measures the frequency of depressed mood and anhedonia over the past two weeks. Swedish
  • 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. 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 Psychological Inflexibility in Pain Scale (PIPS) is a 16-item scale used to assess psychological inflexibility (i.e. avoidance, acceptance, fusion, values orientation). English
  • Supplemental
 Pain Interference
The Penn Online Evaluation of Migraine (POEM) is a web-based, branching logic questionnaire for the automated classification of migraine. English
  • Supplemental
 Headache/Migraine
The Pain Outcomes Questionnaire (POQ) is a multidimensional treatment outcomes measure that assesses specific aspects of pain syndromes. English
  • Supplemental
 Satisfaction
The Parental Psychological Flexibility (PPFQ 10) questionnaire is a parent-report measure designed to assess psychological flexibility among parents of pre-adolescents and adolescents (aged 10-18 years). English
  • Supplemental
 Questions for Parents
The Parents' Postoperative Pain Management Pain Scale (PPPM) is a 15-item instrument to measure a child's pain at home. English
  • Supplemental
 Pain Intensity
The Parents' Postoperative Pain Management Pain Scale (PPPM) is a 15-item instrument to measure a child's pain at home. Spanish
  • Supplemental
 Pain Intensity
The Pediatric Pain Screening Tool (PPST) assesses physical and psychosocial symptomatology in youth with chronic pain. English
  • Supplemental
 Pain Interference
The Parent Risk and Impact Screening Measure (PRISM) consists of 12 items intended to assess parents' reports of their own stress, health, psychosocial functioning, and disruption in activities due to their child's pain and related disability. English
  • Supplemental
 Questions for Parents
The PROMIS-29 v2.0 profile assesses pain intensity using a numeric rating item and seven health domains (physical function, fatigue, pain interference, depressive symptoms, anxiety, ability to participate in social roles and activities, and sleep disturbance) using four items for each domain. English
  • Supplemental
 General Health Measures
The PROMIS 43 Profile is a collection of forty-three items drawn from the seven primary PROMIS domains (depression, anxiety, physical function, pain interference, fatigue, sleep disturbance, and satisfaction with participation in social roles). English
  • Supplemental
 General Health Measures
The PROMIS Ability to Participate in Social Roles and Activities SF 4a measures satisfaction with performing one's usual social roles and activities. English
  • Supplemental
 Physical Functioning
The PROMIS Ability to Participate in Social Roles and Activities SF 4a measures satisfaction with performing one's usual social roles and activities. Spanish
  • Supplemental
 Physical Functioning