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 EQ-5D-5L is a self-assessed, health related, quality of life questionnaire. The scale measures quality of life on a 5-component scale including mobility, self-care, usual activities, pain/discomfort, and anxiety/depression. English
  • Supplemental
General Health Measures
The Epworth Sleepiness Scale (ESS) is a specialized, validated sleep questionnaire containing 8 items that ask for self-reported disclosure of the expectation of "dozing" in a variety of situations. English
  • Supplemental
Sleep
The Experiences Questionnaire is a 20 item self-report measure targeting specifically decentering, a multifaceted construct involving the ability of viewing the self as separate and different from its own thoughts, the capacity of non-reacting to negative experiences, as well as the ability to be self-compassionate. English
  • Supplemental
Treatment Expectations
The Fear-Avoidance Beliefs Questionnaire (FABQ) is a patient reported questionnaire which focuses on how a patient's fear avoidance beliefs about physical activity and work may affect and contribute to their low back pain and resulting disability. English
  • Supplemental
Fear of Pain
The Fear-Avoidance Beliefs Questionnaire (FABQ PA) is a patient reported questionnaire to understand how much low back pain has effects on the ability to manage your everyday activities. English
  • Supplemental
Fear of Pain
The Fear-Avoidance Beliefs Questionnaire (FABQ) is a patient reported questionnaire which focuses on how a patient's fear avoidance beliefs about physical activity and work may affect and contribute to their low back pain and resulting disability. Spanish
  • Supplemental
Fear of Pain
The Functional Assessment of Chronic Illness Therapy Fatigue (FACIT-F) is a 40-item measure that assesses self-reported fatigue and its impact upon daily activities and function. English
  • Supplemental
Fatigue
The Functional Assessment of Cancer Therapy - Breast (FACT-B) is a 37-item instrument designed to measure five domains of HRQOL in breast cancer patients: Physical, social, emotional, functional well-being as well as a breast-cancer subscale. English
  • Supplemental
Cancer
The Fear of Daily Activities Questionnaire (FDAQ) is a self-report measure designed to assess feared common activities for people with chronic pain. English
  • Supplemental
Fear of Pain
The Functional Disability Index (FDI) - Pediatric assesses children and adolescents ability to engage in a range of activities of everyday living. English
  • Supplemental
Disability
The Fear Avoidance - 1 item measures the avoidance of low back pain. English
  • Supplemental
Fear of Pain
The Frequency, Intensity, and Burden of Side Effects Ratings (FIBSER) is a 3 item scale to assess side effects from antidepressant treatment. English
  • Supplemental
General Health Measures
The Revised Fibromyalgia Impact Questionnaire (FIQR) is used to evaluate function, overall impact and symptoms of fibromyalgia over the past 7 days. English
  • Supplemental
Fibromyalgia
The Face, Legs, Activity, Cry, Consolability scale (FLACC) is a behavioral pain assessment scale used for nonverbal or preverbal patients who are unable to self-report their level of pain. English
  • Supplemental
Pain Behavior
The Freiburg Mindfulness Inventory (FMI) is a self-report questionnaire that was developed to measure the trait of mindfulness. English
  • Supplemental
Mindfulness