Common Data Elements (CDEs) Repository

Helping to End Addiction Long-term® Initiative

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.

Instrument Name Description CDE Category Research Topic File Languages Copyright CDE Files
Protocol for assessing a patient's Assets, Risks, and Experiences (PRAPARE)

The Protocol for assessing a patient's Assets, Risks, and Experiences (PRAPARE) measures social determinants of health.

Supplemental Demographics English
Pediatric Pain Screening Tool (PPST)

The Pediatric Pain Screening Tool (PPST) measures risk of poor pain-related outcomes in children and adolescents experiencing pain.

Supplemental Pain Intensity English
Parents Postoperative Pain Management Pain Scale (PPPM)

The Parents Postoperative Pain Management Pain Scale (PPPM) measures behaviors children may exhibit after surgery.

Supplemental Pain Intensity English
Pediatric Migraine Disability Assessment (PedMIDAS)

The Pediatric Migraine Disability Assessment (PedMIDAS) measures impact of headache or migraine on a child's activity in the past 3 months.

Supplemental Headache/Migraine English
Opioid Risk Tool (ORT)

The Opioid Risk Tool (ORT) measures risk for opioid addiction.

Supplemental Opioids English
Nonpharmacological and Self-Care Approaches for Pain Management (NSCAP)

The Nonpharmacological and Self-Care Approaches for Pain Management (NSCAP) measures use of non-pharmacologic measures for pain management.

Supplemental Healthcare Utilization English
Numeric Rating Scale 11 (NRS-11)

The Numeric Rating Scale 11 (NRS-11) measures pain intensity.

Core - Pediatric Pain Intensity English, Spanish
Numeric Rating Scale 11 (NRS-11)

The Numeric Rating Scale 11 (NRS-11) measures pain intensity.

Core - Pediatric Pain Intensity English, Spanish
Mindful Attention Awareness Scale - Adolescent (MAAS-A)

The Mindful Attention Awareness Scale - Adolescent (MAAS-A) measures mindful or automatic behaviors in daily life.

Supplemental Mindfulness English
Jaw Functional Limitation Scale (JFLS)

The Jaw Functional Limitation Scale (JFLS) measures activities avoided due to facial pain.

Supplemental Facial Pain English
Functional Disability Inventory (FDI)

The Functional Disability Inventory (FDI) measures difficulty performing regular activities in the past two weeks.

Supplemental Disability English
Child Stress Disorders Checklist short form (CSDC-SF)

The Child Stress Disorders Checklist short form (CSDC-SF) measures symptoms of posttraumatic stress.

Supplemental Coping with pain English
Coping with Discrimination Scale (CDS)

The Coping with Discrimination Scale (CDS) measures strategies used to deal with discrimination.

Supplemental Discrimination English
Cornell Assessment of Pediatric Delirium (CAPD)

The Cornell Assessment of Pediatric Delirium (CAPD) is used to detect delirium in hospitalized children.

Supplemental Neurological Assessments English
Child Activity Limitation Interview- 9 (CALI-9)

 The Child Activity Limitation Interview- 9 (CALI-9) measures pain-related activity limitation, includes self-report or parent proxy administration. 

Core - Pediatric Pain Interference English, Spanish
Child Activity Limitation Interview- 9 (CALI-9)

 The Child Activity Limitation Interview- 9 (CALI-9) measures pain-related activity limitation, includes self-report or parent proxy administration. 

Core - Pediatric Pain Interference English, Spanish
Patient Health Questionnaire 4 (PHQ 4)

The Patient Health Questionnaire 4 (PHQ 4) is an ultra-brief measurement of core symptoms/signs of depression and anxiety by combining the two-item measure (PHQ 2), consisting of core criteria for depression, as well as a two-item measure for anxiety (GAD 2).

Supplemental Depression English, Spanish
Patient Health Questionnaire 4 (PHQ 4)

The Patient Health Questionnaire 4 (PHQ 4) is an ultra-brief measurement of core symptoms/signs of depression and anxiety by combining the two-item measure (PHQ 2), consisting of core criteria for depression, as well as a two-item measure for anxiety (GAD 2).

Supplemental Depression English, Spanish
Positive and Negative Affect Schedule - Expanded Form (PANAS-X)

The Positive and Negative Affect Schedule - Expanded Form (PANAS-X) measures both Positive Affect and Negative Affect, as well as 11 primary affects labeled: Fear, Sadness, Guilt, Hostility, Shyness, Fatigue, Surprise, Joviality, Self-Assurance, Attentiveness, and Serenity.

Supplemental Affect English
PROMIS-29 v2.0

The PROMIS-29 v2.0 profile assesses pain intensity using a numeric rating item and seven health domains (physical function, fatigue, pain interference, depressive symptoms, anxiety, ability to participate in social roles and activities, and sleep disturbance) using four items for each domain.

Supplemental General Health Measures English, Spanish
PROMIS-29 v2.0

The PROMIS-29 v2.0 profile assesses pain intensity using a numeric rating item and seven health domains (physical function, fatigue, pain interference, depressive symptoms, anxiety, ability to participate in social roles and activities, and sleep disturbance) using four items for each domain.

Supplemental General Health Measures English, Spanish
PROMIS Parent Proxy Pain Interference Item Bank

The PROMIS Parent Proxy Bank v1.0 Pain Interference assesses the self-reported consequences of pain on relevant aspects of a person's life, which includes the extent to which pain hinders engagement with social, cognitive, emotional, physical, and recreational activities.

Supplemental Pain Interference English
Social Network Index (SNI)

The Social Network Index (SNI) assesses participation in 12 types of social relationships. These include relationships with a spouse, parents, parents-in-law, children, other close family members, close neighbors, friends, workmates, schoolmates, fellow volunteers, members of groups without religious affiliation, and religious groups.

Supplemental Social Support English
Central Sensitization Inventory (CSI)

The Central Sensitization Inventory (CSI) is a self-report measure to identify participants who have symptoms that may be related to central sensitization (CS) or central sensitivity syndromes (CSS) such as fibromyalgia, neck injury, temporomandibular joint disorder or migraine/tension headaches.

Supplemental QST English
International Personality Item Pool Big 5 (IPIP 5)

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.

Supplemental Personality English

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