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 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 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
The Structured Clinical Interview for DSM-5 Research Version (SCID-RV) is a semi structured interview guide for making the major DSM-5 diagnoses. English
  • Supplemental
Behavioral health
The Spinal Cord Independence Measure (SCIM) assesses traumatic and non-traumatic, acute and chronic spinal cord injury (SCI). English
  • Supplemental
Spinal Cord
The Self-Administered Comorbidity Questionnaire (SCQ) assesses comorbid conditions in clinical and health services research. English
  • Supplemental
General Health Measures
The Self-Compassion Scale - Short Form (SCS-SF) is a 12-item self-report measure used by adults to measure their capacity for self-compassion (the ability to hold one's feelings of suffering with a sense of warmth, connection and concern). English
  • Supplemental
Protective Factors