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 |
|---|---|---|---|---|---|---|
| Report of the Task Force (RTF) Minimum Dataset | The Report of the Task Force (RTF) Minimum Data is a set minimum dataset for individuals participating in all research studies on Chronic Low back Pain. The minimum dataset includes items of demographics, medical history, and self-report of symptoms and function. |
Supplemental | Pain Quality | English | No |
|
| International Personality Item Pool (IPIP NEO) | 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. |
Supplemental | Personality | English | No |
|
| PROMIS Pain Interference Computerized Adaptive Test (CAT) | The PROMIS Pain Interference Computerized Adaptive Test (CAT) consists of 40 items that measur the self-reported consequences of pain on relevant aspects of a person's life and includes the extent to which pain hinders engagement with social, cognitive, emotional, physical, and recreational activities. |
Supplemental | Pain Interference | English, Spanish | No |
|
| PROMIS Pain Interference Computerized Adaptive Test (CAT) | The PROMIS Pain Interference Computerized Adaptive Test (CAT) consists of 40 items that measur the self-reported consequences of pain on relevant aspects of a person's life and includes the extent to which pain hinders engagement with social, cognitive, emotional, physical, and recreational activities. |
Supplemental | Pain Interference | English, Spanish | No |
|
| Experiences Questionnaire | The Experiences Questionnaire is a 20 item self-report measure targeting specifically decentering, a multifaceted construct involving the ability of viewing the self as separate and different from its own thoughts, the capacity of non-reacting to negative experiences, as well as the ability to be self-compassionate. |
Supplemental | Treatment Expectations | English | Yes |
|
| 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 | No |
|
| Spielberger State-Trait Anxiety Inventory (STAI) | The Spielberger State-Trait Anxiety Inventory (STAI) measures the state and trait components of anxiety. |
Supplemental | Anxiety | English, Spanish | Yes |
|
| Spielberger State-Trait Anxiety Inventory (STAI) | The Spielberger State-Trait Anxiety Inventory (STAI) measures the state and trait components of anxiety. |
Supplemental | Anxiety | English, Spanish | Yes |
|
| Pain Anxiety Symptoms Scale (PASS) | The Pain Anxiety Symptoms Scale (PASS) evaluates pain anxiety, which leads to avoidance of daily activities and normal movements. |
Supplemental | Anxiety | English | No |
|
| PROMIS Emotional Distress Anxiety Item Bank | The PROMIS Emotional Distress Anxiety Item Bank 29-item bank, focusing on fear, worry, dread, hyperarousal and somatic symptoms. |
Supplemental | Anxiety | English, Spanish | No |
|
| PROMIS Emotional Distress Anxiety Item Bank | The PROMIS Emotional Distress Anxiety Item Bank 29-item bank, focusing on fear, worry, dread, hyperarousal and somatic symptoms. |
Supplemental | Anxiety | English, Spanish | No |
|
| Chronic Overlapping Pain Conditions Screener (COPCS) | The Chronic Overlapping Pain Conditions Screener (COPCS) assesses for the presence of one or more of the chronic overlapping pain conditions. |
Supplemental | Chronic Overlapping | English | Yes |
|
| 6 Minute Walk Test | The 6 Minute Walk Test is a sub-maximal exercise test used to assess aerobic capacity and endurance. |
Supplemental | Biomechanics | English | No |
|
| PROMIS Cognitive Function Abilities 6a | The PROMIS Cognitive Function Abilities 6a measures patient-perceived cognitive abilities over the past 7 days. |
Supplemental | Cognitive Function | English | No |
|
| Multidimensional Inventory of Subjective Cognitive Impairment (MISCI) | The Multidimensional Inventory of Subjective Cognitive Impairment (MISCI) measure of cognitive dysfunction in subjects who suffer from fibromyalgia. |
Supplemental | Cognitive Function | English, Spanish | No |
|
| Multidimensional Inventory of Subjective Cognitive Impairment (MISCI) | The Multidimensional Inventory of Subjective Cognitive Impairment (MISCI) measure of cognitive dysfunction in subjects who suffer from fibromyalgia. |
Supplemental | Cognitive Function | English, Spanish | No |
|
| European Organization for Research and Treatment of Cancer Quality of Life Questionnaire 20 (EORTC QLQ-CIPN20) | The European Organization for Research and Treatment of Cancer Quality of Life Questionnaire 20 (EORTC QLQ-CIPN20) measures taxane-induced peripheral neuropathy (TIPN) symptoms. |
Supplemental | Cancer | English | Yes |
|
| Behavior and Symptom Identification Scale 24 (BASIS-24) | The Behavior and Symptom Identification Scale 24 (BASIS-24) assesses treatment outcomes by measuring symptoms and functional difficulties experienced by individuals seeking mental health services. |
Supplemental | Behavioral health | English | Yes |
|
| Coping Orientation to Problems Experienced Inventory (Brief-COPE) | The Coping Orientation to Problems Experienced Inventory (Brief-COPE) is a 28 item self-report questionnaires measures effective and ineffective ways to cope with a stressful life event. |
Supplemental | Coping with pain | English | No |
|
| Trial Making Test (TMT) | The Trail Making Test (TMT) is a neuropsychological assessment to indicate speed of cognitive processing and executive functioning. |
Supplemental | Cognitive Function | English | Yes |
|
| Western Ontario and McMaster Universities Arthritis Index (WOMAC) | The Western Ontario and McMaster Universities Arthritis Index (WOMAC) evaluates the condition of patients with osteoarthritis of the knee and hip, including pain, stiffness, and physical functioning of the joints. |
Supplemental | Arthritis | English, Spanish | Yes |
|
| Western Ontario and McMaster Universities Arthritis Index (WOMAC) | The Western Ontario and McMaster Universities Arthritis Index (WOMAC) evaluates the condition of patients with osteoarthritis of the knee and hip, including pain, stiffness, and physical functioning of the joints. |
Supplemental | Arthritis | English, Spanish | Yes |
|
| Post Hospitalization Behavior Questionnaire (PHBQ) | The Post Hospitalization Behavior Questionnaire (PHBQ) assesses children's post-hospitalization and postoperative new-onset behavioral changes. |
Coping with pain | English, Spanish | No |
|
|
| Post Hospitalization Behavior Questionnaire (PHBQ) | The Post Hospitalization Behavior Questionnaire (PHBQ) assesses children's post-hospitalization and postoperative new-onset behavioral changes. |
Coping with pain | English, Spanish | No |
|
|
| DSM-5 Level 1 Cross-Cutting Symptom Measure (DSM-XC) | The DSM-5 Level 1 Cross-Cutting Symptom Measure (DSM-XC) is a self or informant rated measure that assesses mental health domains across psychiatric diagnoses. |
Supplemental | Behavioral health | English | No |
|
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