Common Data Elements (CDEs) Repository

Common Data Elements (CDEs) Repository

The NIH HEAL Initiative’s  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.

Description Core or Supplemental Research Topic CDE Files

The PROMIS Gastrointestinal Constipation Scale assesses the frequency and intensity of incomplete evacuation, rectal pain, straining, and hard stools, as well as the need for manual extraction of stool.

Supplemental Gastrointestinal

The Revised Fibromyalgia Impact Questionnaire (FIQR) is used to evaluate function, overall impact and symptoms of fibromyalgia over the past 7 days.

Supplemental Fibromyalgia

The Tampa Scale for Kinesiophobia (TSK) is a 12-item questionnaire that quantifies fear of movement or (re)injury.

Supplemental Fear of Pain

The Clinical Global Impression of Change (CGIC) is a one-item measure that assesses the degree of change of a patient's condition.

Supplemental General Health Measures

The PROMIS Fatigue 4a assesses a range of self-reported fatigue symptoms.

Supplemental Fatigue

The PROMIS Fatigue 13a assesses a range of self-reported fatigue symptoms.

Supplemental Fatigue

The Cumulative Illness Rating Scale (CIRS) assesses physical impairment.

Supplemental General Health Measures

The Subjective Opiate Withdrawal Scale (SOWS) is self-administered rating scale to measure the signs and symptoms of opiate withdrawal.

Supplemental Opioids

The Screener and Opioid Assessment for Patients with Pain- Revised (SOAPP-R) evaluates a patient's relative risk for developing problems when placed on long-term opioid therapy.

Supplemental Opioids

The Opioid Risk Tool (ORT) is a self-report screening tool for adult patients in primary care settings to assess risk for opioid abuse among individuals prescribed opioids for treatment of chronic pain.

Supplemental Opioids

The PROMIS Pediatric Global Health measure is a brief and reliable 7-item summary assessment of a child's self-reported health.

Supplemental General Health Measures

The Self-Administered Comorbidity Questionnaire (SCQ) assesses comorbid conditions in clinical and health services research.

Supplemental General Health Measures

The PROMIS PROPr 29+2 is a combination of PROMIS-29 Profile v2.1 and two items from PROMIS Cognitive Function Abilities v2.0.

Supplemental General Health Measures

The Mini-International Neuropsychiatric Interview Substance Use Disorder Scale was designed as a brief structured diagnostic interview for substance use disorders.

Supplemental Substance Use

The Allodynia Symptom Checklist (ASC-12) assesses frequency of cutaneous allodynia symptoms during headache attacks.

Supplemental Headache/Migraine

The Treatment Evaluation Inventory Modified (TEI) assesses parents' acceptance of procedures for behavior problem children.

Supplemental Global Satisfaction with Treatment

The Health Survey (SF-12v2) is a self-reported outcome measure assessing the impact of health on an individual's everyday life. It is often used as a quality of life measure.

Supplemental General Health Measures

The Migraine Disability Assessment (MIDAS) questionnaire assesses headache-related disability with the aim of improving migraine care.

Supplemental Headache/Migraine

The Clinical Opiate Withdrawal Scale (COWS) is a clinician-administered instrument that rates 11 common opiate withdrawal signs or symptoms.

Supplemental Opioids

The Current Opioid Misuse Measure (COMM) is a self-assessment to monitor chronic pain patients on opioid therapy.

Supplemental Opioids

The PROMIS 43 Profile is a collection of forty-three items drawn from the seven primary PROMIS domains (depression, anxiety, physical function, pain interference, fatigue, sleep disturbance, and satisfaction with participation in social roles).

Supplemental General Health Measures

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.

Supplemental General Health Measures

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.

Supplemental General Health Measures

The Tobacco, Alcohol, Prescription medication, and other Substance Use 2 (TAPS 2) identifies specific substance(s) use and risk level, ranging in severity from problem use to the more severe substance use disorder.

Supplemental Substance Use

The Timeline Follow Back (TLFB) is used as a clinical and research tool to obtain a variety of quantitative estimates of marijuana, cigarette, and other drug use over a 7-day period.

Supplemental Substance Use

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