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].

Reset
Download List
No items
Description File Name File Language Core or Supplemental Research Topic
The PROMIS Ability to Participate in Social Roles and Activities SF 8a 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 8a measures satisfaction with performing one's usual social roles and activities. Spanish
  • Supplemental
 Physical Functioning
The PROMIS Alcohol Use 7a assesses a subject's problem drinking behavior. English
  • Supplemental
 Substance Use
The PROMIS Anger 8a assess self-reported angry mood (irritability, frustration), negative social cognitions (interpersonal sensitivity, envy, disagreeableness), and efforts to control anger. English
  • Supplemental
 Anger
The PROMIS Anxiety 4a assesses self-reported fear, anxious misery, hyperarousal, and somatic symptoms. English
  • Supplemental
 Anxiety
The PROMIS Anxiety 4a assesses self-reported fear, anxious misery, hyperarousal, and somatic symptoms. Spanish
  • Supplemental
 Anxiety
The PROMIS Emotional Distress Anxiety SF 8a assess self-reported fear (fearfulness, panic), anxious misery (worry, dread) and hyperarousal (tension, nervousness, restlessness). English
  • Supplemental
 Anxiety
The PROMIS Emotional Distress Anxiety SF 8a assess self-reported fear (fearfulness, panic), anxious misery (worry, dread) and hyperarousal (tension, nervousness, restlessness). Spanish
  • Supplemental
 Anxiety
The PROMIS Anxiety CAT is a 29-item bank, focusing on fear, worry, dread, hyperarousal and somatic symptoms. English
  • Supplemental
 Anxiety
The PROMIS Anxiety CAT is a 29-item bank, focusing on fear, worry, dread, hyperarousal and somatic symptoms. Spanish
  • Supplemental
 Anxiety
The PROMIS Appeal of Substance Use 7a measures a person's positive appeal of substance use. English
  • Supplemental
 Substance Use
The PROMIS Cancer Emotional Distress Depression Item bank assesses despression in subjects who have or have had cancer. English
  • Supplemental
 Cancer
The PROMIS Cognitive Function 4a assesses patient-perceived cognitive deficits. English
  • Supplemental
 Cognitive Function
The PROMIS Cognitive Function Abilities 6a measures patient-perceived cognitive abilities over the past 7 days. English
  • Supplemental
 Cognitive Function
The PROMIS Companionship SF 4a is a 4 item, self-reported measure to assess how often a person experiences companionship. English
  • Supplemental
 Social Support
The PROMIS Companionship SF 4a is a 4 item, self-reported measure to assess how often a person experiences companionship. Spanish
  • Supplemental
 Social Support
The PROMIS Emotional Distress Depression 4a assesses the depression in individuals age 18 and older. English
  • Supplemental
 Depression
The PROMIS Emotional Distress Depression 4a assesses the depression in individuals age 18 and older. Spanish
  • Supplemental
 Depression
The PROMIS Emotional Distress Depression 8b assesses the depression in individuals age 18 and older. English
  • Supplemental
 Depression
The PROMIS Emotional Distress Depression 8b assesses the depression in individuals age 18 and older. Spanish
  • Supplemental
 Depression
The PROMIS Emotional Support 4a assesses perceived feelings of being cared for and valued as a person. English
  • Supplemental
 Emotional Support
The PROMIS Emotional Support item 4a assesses perceived feelings of being cared for and valued as a person. Spanish
  • Supplemental
 Emotional Support
The PROMIS Emotional Support 6a measures feelings of being cared for and having confident relationships. English
  • Supplemental
 Emotional Support
The PROMIS Emotional Support 6a measures feelings of being cared for and having confident relationships. Spanish
  • Supplemental
 Emotional Support
The PROMIS Emotional Support 8a measures feelings of being cared for and having confident relationships. English
  • Supplemental
 Emotional Support