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 Pediatric Upper Extremity 8a assesses a dimension of physical functioning, upper extremity, in a pediatric population. Spanish
  • Supplemental
 Biomechanics
The PROMIS Physical Function 4a is a 4 item self-reported capability rather than actual performance of physical activities. English
  • Supplemental
 Physical Functioning
The PROMIS Physical Function 4a is a 4 item self-reported capability rather than actual performance of physical activities. Spanish
  • Supplemental
 Physical Functioning
The PROMIS Physical Function 8b is a 8 item self-reported capability rather than actual performance of physical activities. English
  • Supplemental
 Physical Functioning
The PROMIS Physical Function 8b is a 8 item self-reported capability rather than actual performance of physical activities. Spanish
  • Supplemental
 Physical Functioning
The PROMIS Physical Function CAT measures self-reported capability rather than actual performance of physical activities. English
  • Supplemental
 Physical Functioning
The PROMIS Positive Affect 15a is a 15-item tool to assess happiness, serenity, and cognitive engagement of the person. English
  • Supplemental
 Protective Factors
The PROMIS Prescription Pain Med Misuse 7a measures subjects prescription pain medication misuse behavior in the past three months. English
  • Supplemental
 Substance Use
The PROMIS PROPr 29+2 is a combination of PROMIS-29 Profile v2.1 and two items from PROMIS Cognitive Function Abilities v2.0. English
  • Supplemental
 General Health Measures
The PROMIS Psychosocial Illness Impact Negative 8a assesses the direct negative psychosocial effect of an illness, distinct from general emotional distress. English
  • Supplemental
 Psychosocial Impact
The PROMIS Psychosocial Illness Impact Positive 8a assesses positive psychosocial (emotional and social) outcomes of illness. English
  • Supplemental
 Psychosocial Impact
The PROMIS Satisfaction with Social Roles and Activities SF 8a assesses satisfaction with performing one's usual social roles and activities. English
  • Supplemental
 Satisfaction
The PROMIS Satisfaction with Social Roles and Activities SF 8a assesses satisfaction with performing one's usual social roles and activities. Spanish
  • Supplemental
 Satisfaction
The Self-Efficacy for Managing Chronic Conditions for Managing Daily Activities SF 8a is an 8-item, self-report measure assessing a person's self-efficacy with a chronic condition, in relation to managing daily activities. English
  • Supplemental
 Self-Efficacy
The Self-Efficacy for Managing Chronic Conditions for Managing Emotions SF 4a is a 4-item, self-report measure assessing a person's self-efficacy with a chronic condition, in relation to managing emotions. English
  • Supplemental
 Self-Efficacy
The Self-Efficacy for Managing Chronic Conditions for Managing Emotions SF 8a is an 8-item, self-report measure assessing a person's self-efficacy with a chronic condition, in relation to managing emotions. English
  • Supplemental
 Self-Efficacy
The Self-Efficacy for Managing Chronic Conditions for Managing Medications and Treatment SF 8a is an 8-item, self-report measure assessing a person's self-efficacy with a chronic condition, in relation to managing medications and treatment. English
  • Supplemental
 Self-Efficacy
The Self-Efficacy for Managing Chronic Conditions for Managing Social Interactions SF 4a is a 4-item, self-report measure assessing a person's self-efficacy with a chronic condition, in relation to managing social interactions. English
  • Supplemental
 Self-Efficacy
The Self-Efficacy for Managing Chronic Conditions for Managing Social Interactions SF 8a is an 8-item, self-report measure assessing a person's self-efficacy with a chronic condition, in relation to managing social interactions. English
  • Supplemental
 Self-Efficacy
The Self-Efficacy for Managing Chronic Conditions for Managing Symptoms SF 4a is a 4-item, self-report measure assessing a person's self-efficacy with a chronic condition, in relation to managing symptoms. English
  • Supplemental
 Self-Efficacy
The Self-Efficacy for Managing Chronic Conditions for Managing Symptoms SF 8a is an 8-item, self-report measure assessing a person's self-efficacy with a chronic condition, in relation to managing symptoms. English
  • Supplemental
 Self-Efficacy
The PROMIS Severity of Substance Use 7a (Past 30 days) measures the severity of a subject's substance abuse behavior over the past 30 days. English
  • Supplemental
 Substance Use
The PROMIS Sleep Disturbance SF 4a measure assesses the pure domain of sleep disturbance in individuals age 18 and older. English
  • Supplemental
 Sleep
The PROMIS Sleep Disturbance SF 4a measure assesses the pure domain of sleep disturbance in individuals age 18 and older. Spanish
  • Supplemental
 Sleep
The PROMIS Sleep Disturbance Short Form assesses the pure domain of sleep disturbance in individuals age 18 and older. English
  • Supplemental
 Sleep