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 PedsQL Sickle Cell Disease Parent Report ages 13-18 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 Teen Report 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 Daily Sleep Interference Scale (DSIS) consists of an 11-point Likert scale with which patients assess how pain has interfered with their sleep.

Supplemental Sleep

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.

Supplemental Sleep

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

Supplemental Self-Efficacy

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

Supplemental Self-Efficacy

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

Supplemental Self-Efficacy

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

Supplemental Self-Efficacy

The Adverse Childhood Experiences (ACEs) Questionnaire is a 10-item measure used to measure childhood trauma.

Supplemental Trauma/PTSD

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.

Supplemental Trauma/PTSD

The Primary Care PTSD Screen for DSM 5 (PC PTSD 5) is a 5-item screen that was designed to identify individuals with probable PTSD in primary care settings.

Supplemental Trauma/PTSD

The PROMIS Sleep-Related Impairment CAT questionnaire measures self-reported alertness, sleepiness, tiredness, and functional impairments associated with sleep problems during waking hours within the past 7 days.

Supplemental Sleep

The PROMIS Companionship SF 4a is a 4 item, self-reported measure to assess how often a person experiences companionship.

Supplemental Social Support

The Interpersonal Support Evaluation List 12 (ISEL 12) measures functional (i.e., perceived) social support.

Supplemental Social Support

The Multidimensional Scale of Perceived Social Support (MSPSS) assesses perceived adequacy of social support from 3 sources: family, friends, and significant other.

Supplemental Social Support

The PROMIS Pediatric Peer Relationships SF 8a assesses self-reported quality of relationships with friends and other acquaintances, in the pediatric population.

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.

Supplemental Sleep

The Medical Outcomes Study Sleep Scale measures 6 factors: sleep initiation, maintenance, respiratory problems, quantity, perceived adequacy, and somnolence.

Supplemental Sleep

The Pittsburg Sleep Quality Index is a measure to indicate how frequently one has experienced certain sleep difficulties over the past month and to rate their overall sleep quality.

Supplemental Sleep

The PROMIS Sleep Disturbance SF 4a measure assesses the pure domain of sleep disturbance in individuals age 18 and older.

Supplemental Sleep

The PROMIS Sleep-Related Impairment 8a questionnaire measures self-reported alertness, sleepiness, tiredness, and functional impairments associated with sleep problems during waking hours within the past 7 days.

Supplemental Sleep

The Photosensitivity Assessment Questionnaire (PAQ) is a self-report measure that evaluates two dimensions of photosensitivity: photophilia and photophobia.

Supplemental Sensory

The PedsQL Sickle Cell Disease Infant age 1-12 months 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 Infant ages 13-24 months 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 PTSD Checklist for DSM 5 (PCL 5) is a 20-item self-report measure that assesses the 20 DSM-5 symptoms of PTSD.

Supplemental Trauma/PTSD

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