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 Health Literacy questionnaire (HL) is a three-item assessment to measure literacy in Spanish-speaking and diverse English-speaking populations, in the healthcare setting. Spanish
  • Supplemental
The Hyperacusis Questionnaire (HQ) assesses the symptoms of hyperacusis (e.g. by examining how this disorder affects behavior and emotions in the daily life). English
  • Supplemental
 Sensory
The International Positive and Negative Affect Schedule (I-PANAS-SF) is composed of two 10-item mood scales: one to measure positive affectivity and the other to measure negativity affectivity. English
  • Supplemental
 Affect
The Intersectional Discrimination Index (InDI) consists of three subscales measuring the health impacts of intersectional experiences with anticipated (InDI-A), day-to-day (InDI-D), and major (InDI-M) discrimination. English
  • Supplemental
 Discrimination
The International Physical Activity Questionnaire long form (IPAQ LF) was developed for adults aged 18 to 65 years with the aim to assess population levels of physical activity across countries. English
  • Supplemental
 Physical Activity
The International Physical Activity Questionnaire short form (IPAQ SF) was developed for adults aged 18 to 65 years with the aim to assess population levels of physical activity across countries. English
  • Supplemental
 Physical Activity
The International Personality Item Pool Big 5 (IPIP 5) and is a self-reported questionnaire that assesses one's personality according to the Big Five model. The Big Five personality traits assessed are Openness, Agreeableness, Conscientiousness, Neuroticism and Extraversion. English
  • Supplemental
 Personality
The International Personality Item Pool (IPIP NEO) is a 120-item, self-reported questionnaire that assesses one's personality according to the Big Five model. The Big Five personality traits assessed are Openness, Agreeableness, Conscientiousness, Neuroticism and Extraversion. English
  • Supplemental
 Personality
The Interpersonal Support Evaluation List 12 (ISEL 12) measures functional (i.e., perceived) social support. English
  • Supplemental
 Social Support
The Interpersonal Support Evaluation List 12 (ISEL 12) measures functional (i.e., perceived) social support. Spanish
  • Supplemental
 Social Support
The Insomnia Severity Index (ISI) is a brief instrument designed to assess the severity of both nighttime and daytime components of insomnia. English, Spanish
  • Supplemental
 Sleep
The International Standards for Neurological Classification of Spinal Cord Injury (ISNCSCI) is an assessment for patients with spinal cord injury (SCI) and their measurement properties have been evaluated in patients with traumatic lesions. English
  • Supplemental
 Spinal Cord
The Keele STarT Back Screening Tool is a brief questionnaire aimed at screening prognostic indicators in patients with low back pain. English
  • Supplemental
 Low Back Pain
The Knee Injury Osteoarthritis Outcome Score (KOOS-12) evaluates both short-term and long-term consequences of knee injury. English
  • Supplemental
 Arthritis
The Knee Injury Osteoarthritis Outcome Score (KOOS-12) evaluates both short-term and long-term consequences of knee injury. Spanish
  • Supplemental
 Arthritis
The Life Events Checklist for DSM 5 (LEC 5) is a self-report measure designed to screen for potentially traumatic events in a respondent's lifetime. English
  • Supplemental
 Trauma/PTSD
The Life Orientation Test Revised (LOT R) is a psychological instrument that assesses one's dispositional level of optimism. English
  • Supplemental
 Protective Factors
The Multidimensional Assessment of Fatigue Scale (MAF) is an assessment tool to measure fatigue and intervention effectiveness. English
  • Supplemental
 Fatigue
The Multidimensional Assessment of Interoceptive Awareness Version 2 (MAIA-2) is an 8-subscale state-trait self-report questionnaire to measure multiple dimensions of interoception. The MAIA-2 is suitable for adults (18+) and has 37 items. English
  • Supplemental
 Pain Symptom and Assessment
The Medication Adherence Rating Scale (MARS) is a 10-item self-report measure of medication adherence in psychosis. English
  • Supplemental
 Medication
The Medication Adherence Rating Scale 5 (MARS 5) is a 5-item self-report measure of medication adherence in psychosis. English
  • Supplemental
 Medication
The Michigan Body Map (MBM) is a self-report measure to assess body areas where chronic pain is experienced and to specifically quantify the degree of widespread body pain when assessing for centralized pain features. English
  • Supplemental
 Body Maps
The Michigan Body Map (MBM) is a self-report measure to assess body areas where chronic pain is experienced and to specifically quantify the degree of widespread body pain when assessing for centralized pain features. Spanish
  • Supplemental
 Body Maps
The Microbiome Study Bristol Stool Chart classifies feces into seven groups. It is used in both clinical and experimental fields. English
  • Supplemental
 Microbiome
The Migraine Disability Assessment (MIDAS) questionnaire assesses headache-related disability with the aim of improving migraine care. English
  • Supplemental
 Headache/Migraine