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 Self-Efficacy for Managing Chronic Conditions for Managing Social Interactions SF 4a is a 4-item, self-report measure assessing a person's self-efficacy with a chronic condition, in relation to managing social interactions.

 Supplemental Self-Efficacy

The Self-Efficacy for Managing Chronic Conditions for Managing Social Interactions SF 8a is an 8-item, self-report measure assessing a person's self-efficacy with a chronic condition, in relation to managing social interactions.

 Supplemental Self-Efficacy

The Self-Efficacy for Managing Chronic Conditions for Managing Daily Activities SF 8a is an 8-item, self-report measure assessing a person's self-efficacy with a chronic condition, in relation to managing daily activities.

 Supplemental Self-Efficacy

The Self-Efficacy for Managing Chronic Conditions for Managing Medications and Treatment SF 8a is an 8-item, self-report measure assessing a person's self-efficacy with a chronic condition, in relation to managing medications and treatment.

 Supplemental Self-Efficacy

The Composite Autonomic Symptom Score 31 (COMPASS 31) is a 31-item self-assessment questionnaire assessing autonomic symptoms in six domains, orthostatic intolerance, vasomotor, secretomotor, gastrointestinal, bladder, and pupillomotor function.

 Supplemental Sensory

The Generalized Sensory Sensitivity 8 (GSS 8) assesses whether a person has experienced various sensitivity symptoms for at least 3 months, over the past year (e.g., sensitivity to sound).

 Supplemental Sensory

The Hyperacusis Questionnaire (HQ) assesses the symptoms of hyperacusis (e.g. by examining how this disorder affects behavior and emotions in the daily life).

 Supplemental Sensory

The PROMIS Satisfaction with Social Roles and Activities SF 8a assesses satisfaction with performing one's usual social roles and activities.

 Supplemental Satisfaction

The Working Alliance Inventory Form C (WAI-C) assesses the strength and dimensions of the alliance.

 Supplemental Satisfaction

The Working Alliance Inventory Short Form (WAI-SF) assesses the strength and dimensions of the alliance.

 Supplemental Satisfaction

The Chronic Pain Self Efficacy Scale (CPSS) measures efficacy expectations for coping with the consequences of chronic pain.

 Supplemental Self-Efficacy

The PROMIS General Self-Efficacy 4a is a 4 item, self-report measure assessing the confidence of a person's self-efficacy.

 Supplemental Self-Efficacy

The Pain Self-Efficacy Questionnaire (PSEQ) is a 2-item questionnaire to assess the confidence people with ongoing pain have in performing activities while in pain.

 Supplemental Self-Efficacy

The Pain Self-Efficacy Questionnaire (PSEQ) is a 10-item questionnaire to assess the confidence people with ongoing pain have in performing activities while in pain.

 Supplemental Self-Efficacy

The Parental Psychological Flexibility (PPFQ 10) questionnaire is a parent-report measure designed to assess psychological flexibility among parents of pre-adolescents and adolescents (aged 10-18 years).

 Supplemental Questions for Parents

The Parent Risk and Impact Screening Measure (PRISM) consists of 12 items intended to assess parents' reports of their own stress, health, psychosocial functioning, and disruption in activities due to their child's pain and related disability.

 Supplemental Questions for Parents

The Opening Minds Stigma Scale for Health Care Providers (OMS-HC) was developed to measure stigma in Health Care Providers.

 Supplemental Questions for Providers

The Connor Davidson Resilience Scale 2 item (CD RISC 2) comprises of 2 items, each rated on a 5-point scale (0-4), with higher scores reflecting greater resilience.

 Supplemental Resilience

The Connor-Davidson Resilience scale (CD RISC 25) comprises of 25 items, each rated on a 5-point scale (0-4), with higher scores reflecting greater resilience.

 Supplemental Resilience

The Pain Resilience Scale measures cognitive/affective positivity and behavioral perseverance during exposure to noxious stimuli.

 Supplemental Resilience

The PedsQL Sickle Cell Disease Parent Report ages 2-4 Module is a brief, valid, reliable self- or proxy-administered questionnaire that captures health-related quality of life (HRQOL) in pediatric patients with sickle cell disease.

 Supplemental Sickle Cell

The PedsQL Sickle Cell Disease Child Report ages 5-7 Module is a brief, valid, reliable self- or proxy-administered questionnaire that captures health-related quality of life (HRQOL) in pediatric patients with sickle cell disease.

 Supplemental Sickle Cell

The PedsQL Sickle Cell Disease Parent Report ages 5-7 Module is a brief, valid, reliable self- or proxy-administered questionnaire that captures health-related quality of life (HRQOL) in pediatric patients with sickle cell disease.

 Supplemental Sickle Cell

The PedsQL Sickle Cell Disease Child Report ages 8-12 Module is a brief, valid, reliable self- or proxy-administered questionnaire that captures health-related quality of life (HRQOL) in pediatric patients with sickle cell disease.

 Supplemental Sickle Cell

The PedsQL Sickle Cell Disease Parent Report ages 8-12 Module is a brief, valid, reliable self- or proxy-administered questionnaire that captures health-related quality of life (HRQOL) in pediatric patients with sickle cell disease.

 Supplemental Sickle Cell

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