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 Central Sensitization Inventory (CSI) is a self-report measure to identify participants who have symptoms that may be related to central sensitization (CS) or central sensitivity syndromes (CSS) such as fibromyalgia, neck injury, temporomandibular joint disorder or migraine/tension headaches. English
  • Supplemental
 QST
The Client Satisfaction Questionnaire (CSQ) assesses consumer satisfaction with health and human services including governmental and public benefit programs and services. English
  • Supplemental
 Satisfaction
The Coping Strategies Questionnaire (CSQ) 24 item measures the use of strategies for coping with pain by assessing six domains: distraction; catastrophizing; ignoring pain sensations; distancing from pain. English
  • Supplemental
 Coping with pain
The Diagnostic Criteria for Temporomandibular Disorders (DC TMD) is multifactorial and includes biologic, environmental, social, emotional, and cognitive triggers. Diagnosis is most often based on history and physical examination. English
  • Supplemental
 Facial Pain
The Diagnostic Criteria for Temporomandibular Disorders (DC TMD) is multifactorial and includes biologic, environmental, social, emotional, and cognitive triggers. Diagnosis is most often based on history and physical examination. Swedish
  • Supplemental
 Facial Pain
The Diagnostic Criteria for Temporomandibular Disorders (DC TMD) exam form collects information about the patient's pain history, opening and excursive ranges of motion, joint sounds and pain on palpation of the masticatory muscles and TMJs. English
  • Supplemental
 Facial Pain
The Diagnostic Criteria for Temporomandibular Disorders (DC TMD) exam form collects information about the patient's pain history, opening and excursive ranges of motion, joint sounds and pain on palpation of the masticatory muscles and TMJs. Swedish
  • Supplemental
 Facial Pain
The Decisional Conlifct Scale (DCS) assess uncertainty in choosing options inmodifiable factors contributing to uncertainty and effective decision making. English
  • Supplemental
 Shared Decision
The Neuropathic Pain 4 Questions (DN4) is a screening tool for neuropathic pain consisting of interview questions and examination tests. English
  • Supplemental
 Neuropathic Pain
The Domain Specific Life Satisfaction Ages 18+ Fixed Form assesses one's cognitive evaluation of life experiences and is concerned with whether people like their lives or not. English
  • Supplemental
 Satisfaction
The Dialysis Symptom Index (DSI) assesses symptoms and their severity in patients with end-stage renal disease. English
  • Supplemental
 Dialysis
The Daily Sleep Interference Scale (DSIS) consists of an 11-point Likert scale with which patients assess how pain has interfered with their sleep. English
  • Supplemental
 Sleep
The DSM-5 Level 1 Cross-Cutting Symptom Measure (DSM-XC) is a self or informant rated measure that assesses mental health domains across psychiatric diagnoses. English
  • Supplemental
 Behavioral health
The Everyday Discrimination Scale (EDS) measures subjective experiences of daily discrimination against minority populations. English
  • Supplemental
 Discrimination
The Edinburgh Postnatal Depression Scale (EPDS) is a screening tool that diagnoses postpartum depression (PPD) or anxiety. English
  • Supplemental
 Depression
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