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 Medical Outcomes Study Sleep Scale measures 6 factors: sleep initiation, maintenance, respiratory problems, quantity, perceived adequacy, and somnolence. English
  • Supplemental
 Sleep
The Measure of Sickle Cell Stigma (MoSCS) is an 11-item questionnaire that assesses the amount of total stigma experienced by sickle cell disease patients. English
  • Supplemental
 Sickle Cell
The McGill Pain Questionnaire Short Form (MPQ SF) assesses both the intensity and quality of pain. English
  • Supplemental
 Pain Quality
The McGill Pain Questionnaire Short Form Version 2 (MPQ SF 2) provides a comprehensive measure of pain symptoms of both neuropathic and non-neuropathic pain conditions. English
  • Supplemental
 Pain Quality
The Memorial Symptom Assessment Scale Short Form (MSAS-SF) provides multidimensional information about a diverse group of common symptoms in the cancer population. English
  • Supplemental
 Cancer
The Multidimensional Scale of Perceived Social Support (MSPSS) assesses perceived adequacy of social support from 3 sources: family, friends, and significant other. English
  • Supplemental
 Social Support
The modified Yale Preoperative Anxiety Scale (mYPAS) assesses child anxiety during induction of anesthesia. English
  • Supplemental
 Anxiety
The Neck Disability Index (NDI) is a self-report questionnaire used to determine how neck pain affects a patient's daily life and to assess the self-rated disability of patients with neck pain. English
  • Supplemental
 Neck Pain
The NEO Personality Inventory 3 (NEO-PI-3) is a comprehensive measure of the five major domains of personality (Neuroticism, Extraversion, Openness to Experience, Agreeableness, and Conscientiousness) and the six facets that define each domain. English
  • Supplemental
 Personality
The NIDA ASSIST ADA modified Levels 1 and 2 measures risky substance use in adult patients. English
  • Supplemental
 Substance Use
The Norfolk Quality of Life-Diabetic Neuropathy (QOL-DN) questionnaire is an instrument to assess QOL in diabetic polyneuropathy. English
  • Supplemental
 Quality of Life
The Neuropathic Pain Symptom Inventory (NPSI) evaluates the different symptoms of neuropathic pain. English, Spanish
  • Supplemental
 Neuropathic Pain
The Neurobehavioral Symptom Inventory (NSI) measures post-concussion symptoms following a traumatic brain injury (TBI). English
  • Supplemental
 Neurological Assessments
The Oswestry Low Back Pain Disability Questionnaire (ODI) measures a patient's permanent functional disability. English
  • Supplemental
 Low Back Pain
The Orthostatic Hypotension Questionnaire (OHQ) assesses the burden of symptoms with two components: the six-item symptoms assessment scale and a four-item daily activity scale. English
  • Supplemental
 General Health Measures
The Opening Minds Stigma Scale for Health Care Providers (OMS-HC) was developed to measure stigma in Health Care Providers. English
  • Supplemental
 Questions for Providers