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 PROMIS Sleep-Related Impairment 8a questionnaire measures self-reported alertness, sleepiness, tiredness, and functional impairments associated with sleep problems during waking hours within the past 7 days. English
  • Supplemental
 Sleep
The PROMIS Sleep-Related Impairment 8a questionnaire measures self-reported alertness, sleepiness, tiredness, and functional impairments associated with sleep problems during waking hours within the past 7 days. Spanish
  • Supplemental
 Sleep
The PROMIS Sleep-Related Impairment CAT questionnaire measures self-reported alertness, sleepiness, tiredness, and functional impairments associated with sleep problems during waking hours within the past 7 days. English
  • Supplemental
 Sleep
The PROMIS Sleep-Related Impairment CAT questionnaire measures self-reported alertness, sleepiness, tiredness, and functional impairments associated with sleep problems during waking hours within the past 7 days. Spanish
  • Supplemental
 Sleep
The PROMIS Social Isolation SF 8a assesses perceptions of being avoided, excluded, detached, disconnected from, or unknown by others. English
  • Supplemental
 Social Support
The PROMIS Social Isolation SF 8a assesses perceptions of being avoided, excluded, detached, disconnected from, or unknown by others. Spanish
  • Supplemental
 Social Support
The PROMIS Upper Extremity SF 7a measures functionality by asking questions about the patient's ability to carry objects or reach different body parts. English
  • Supplemental
 Biomechanics
The Personal Resource Questionnaire (PRQ 2000) contains 15 items to understand the level of perceived social support. English
  • Supplemental
 Social Support
The Pain Self-Efficacy Questionnaire (PSEQ) is a 10-item questionnaire to assess the confidence people with ongoing pain have in performing activities while in pain. English
  • Supplemental
 Self-Efficacy
The Pain Self-Efficacy Questionnaire (PSEQ) is a 2-item questionnaire to assess the confidence people with ongoing pain have in performing activities while in pain. English
  • Supplemental
 Self-Efficacy
The Patient Specific Functional Scale (PSFS) measures physical function in patients with musculoskeletal and non-musculoskeletal disorders. English
  • Supplemental
 Physical Functioning
The Pain Stages of Change Questionnaire Adolescent (PSOCQ A) measures an individual's willingness to adopt a self-management plan to control their chronic pain in the adolescent population. English
  • Supplemental
 Stages of Change
The Pittsburg Sleep Quality Index is a measure to indicate how frequently one has experienced certain sleep difficulties over the past month and to rate their overall sleep quality. English
  • Supplemental
 Sleep
The Pittsburg Sleep Quality Index is a measure to indicate how frequently one has experienced certain sleep difficulties over the past month and to rate their overall sleep quality. Spanish
  • Supplemental
 Sleep
The Perceived Stress Scale 10 item (PSS 10) measures the degree to which situations in one's life are appraised as stressful. English
  • Supplemental
 Stress
The Perceived Stress Scale 4 item (PSS 4) measures the degree to which situations in one's life are appraised as stressful. English, Spanish
  • Supplemental
 Stress
The European Organization for Research and Treatment of Cancer Quality of Life Questionnaire 20 (EORTC QLQ-CIPN20) measures taxane-induced peripheral neuropathy (TIPN) symptoms. English
  • Supplemental
 Cancer
The Rapid Assessment of Physical Activity (RAPA) is a 9-item questionnaire developed to measure the amount, type, and intensity of habitual PA participation among older adults. English
  • Supplemental
 Physical Activity
The Rapid Assessment of Physical Activity (RAPA) is a 9-item questionnaire developed to measure the amount, type, and intensity of habitual PA participation among older adults. Spanish
  • Supplemental
 Physical Activity
The Rey Auditory Verbal Learning Test (RAVLT) measures a person's ability to encode, combine, store and recover verbal information in different stages of immediate memory. English
  • Supplemental
 Neurological Assessments
The Roland Morris Low Back Pain and Disability Questionnaire (RMDQ) assesses self-rated physical disability caused by low back pain. English
  • Supplemental
 Low Back Pain
The Report of the Task Force (RTF) Minimum Data is a set minimum dataset for individuals participating in all research studies on Chronic Low back Pain. The minimum dataset includes items of demographics, medical history, and self-report of symptoms and function. English
  • Supplemental
 Pain Quality
The Rural-Urban Commuting Area (RUCA) codes measures population density, levels of urbanization and journey-to-work commuting to characterize U.S. census tracts. English
  • Supplemental
 Demographics
The Leeds Assessment of Neuropathic Symptoms and Signs (LANSS) pain scale is an assessment tool to analyze and classify pain. English
  • Supplemental
 Neuropathic Pain
The Symptom Evaluation Sports Concussion Assessment Tool (SCAT) aids in evaluation of athletes suspected of having sustained an assessment and management of concussion. English
  • Supplemental
 TBI