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Common Data Element (CDE) Resource Portal

Domains

This table displays the domains available in selected CDE Resources. This table shows how the Domains correspond with the Subject Areas designated in the CDE Resource Portal. For a broader view, Subject Areas for NIH CDE Initiatives and NIH CDE Tools and Resources are arranged in tables so they can be easily compared. Domains may change as additional CDEs are added to that Resource (domains assessed in June of 2012).

ResourceSubject AreaDomain Title from ResourceDomain Description from Resource
EDRN Alcohol, Tobacco and Other Substances Alcohol Consumption Average number of drinks during different periods of the subject's lifetime.
EDRN Alcohol, Tobacco and Other Substances Smoking History/Tobacco Usage Average number of cigarettes during different periods of the subject's lifetime.
GEM Alcohol, Tobacco and Other Substances Smoking/Tobacco  
GEM Alcohol, Tobacco and Other Substances Substance Abuse  
PhenX Alcohol, Tobacco and Other Substances Alcohol, Tobacco and Other Substances Age of first use, frequency of use in the past 30 days, and lifetime use.
PhenX Alcohol, Tobacco and Other Substances Substance Abuse and Addiction Laboratory tests and history of the subject’s exposure to and use of alcohol, tobacco, and other substances.
GRDR Anthropometrics Anthropometric The subject’s current weight and height.
NDAR Anthropometrics Physical Characteristics  
PhenX Anthropometrics Anthropometrics Physical measurements of the subject’s body.
EDRN Cancer Cancer History Cancer symptoms, detection, and treatment.
EDRN Cancer Family Cancer History Specific details about family cancer history.
FACIT Cancer Bladder cancer  
FACIT Cancer Bone Marrow Transplantation  
FACIT Cancer Bone Treatment Convenience and Satisfaction  
FACIT Cancer Brain cancer  
FACIT Cancer Brain cancer - Pediatric  
FACIT Cancer Breast cancer  
FACIT Cancer Cancer in the Central Nervous System  
FACIT Cancer Cancer of the Cervix  
FACIT Cancer Cancer Therapy - General  
FACIT Cancer Cancer Therapy - General Population  
FACIT Cancer Cancer Therapy - Melanoma  
FACIT Cancer Cancer Therapy - Multiple Myeloma  
FACIT Cancer Colorectal cancer  
FACIT Cancer Endometrial cancer  
FACIT Cancer Gastric Cancer  
FACIT Cancer Head & Neck cancer  
FACIT Cancer Hepatobiliary cancer (liver, bile duct and pancreas)  
FACIT Cancer Kidney cancer  
FACIT Cancer Leukemia  
FACIT Cancer Lung cancer  
FACIT Cancer Lymphoma (NHL)  
FACIT Cancer Nasopharyngeal cancer  
FACIT Cancer Ovarian cancer  
FACIT Cancer Prostate cancer  
FACIT Cancer Taxane therapy  
FACIT Cancer Vulva cancer  
GEM Cancer Cancer  
PhenX Cancer Cancer Cancer screenings and risk factors for cancer.
GEM Cardiovascular and Circulatory Cardiovascular  
PhenX Cardiovascular and Circulatory Cardiovascular Laboratory tests, family history, and medical history related to cardiovascular health.
FACIT Cardiovascular and Circulatory Neutropenia  
FACIT Cardiovascular and Circulatory Thrombocytopenia  
FACIT Cardiovascular and Circulatory Lymphedema  
EDRN Demographics Patient Contact Info. Directory Contact information for the subject.
EDRN Demographics Patient Contact Info. Demographics Specific vital or social details about a subject.
GEM Demographics Patient Contact Info. Education, Training, and or Career Development  
GRDR Demographics Patient Contact Info. Contact & Communication Preferences Patient preferred methods of contact and communication.
GRDR Demographics Patient Contact Info. Current Contact Information How to collect the address, phone numbers, and other contact information for each subject.
GRDR Demographics Patient Contact Info. Socio-demographic Specific vital, social, and economic details about subjects and their families.
NDAR Demographics Patient Contact Info. Demographics  
NINDS Demographics Patient Contact Info. General Information applicable to studies involving a wide range of neurological disease and conditions, including demographics, medical history, treatment and intervention, and safety.
PhenX Demographics Patient Contact Info. Demographics Vital, social, and economic details about subjects and their families.
FACIT Diabetes and Other Endocrine Endocrine Symptoms  
GEM Diabetes and Other Endocrine Diabetes  
PhenX Diabetes and Other Endocrine Diabetes Laboratory tests, family history, and medical history related to diabetes.
EDRN Environmental Exposures Occupational History Occupation history and exposure to carcinogens.
GEM Environmental Exposures Occupational Health  
PhenX Environmental Exposures Environmental Exposures Laboratory tests and history related to exposure to potential risks in the subject’s environment.
EDRN Excretory Bladder Bladder cancer related laboratory test information.
EDRN Excretory Genitourinary Genitourinary symptoms, detection, and treatment.
EDRN Excretory Kidney Renal disease and dialysis.
EDRN Excretory Liver Liver conditions symptoms, detection, and treatment.
EDRN Excretory Urine Details of specimen preparation and storage.
FACIT Excretory Ascites  
FACIT Excretory Incontinence Therapy - Urinary  
EDRN Gastrointestinal Colorectal Colorectal cancer symptoms, detection, and treatment.
EDRN Gastrointestinal Gastrointestinal Presence of gastral or esophageal varices.
EDRN Gastrointestinal Pancreas Details about pancreas pathology.
EDRN Gastrointestinal Stool Details of specimen preparation and storage.
FACIT Gastrointestinal Abdominal symptoms  
FACIT Gastrointestinal Diarrhea  
FACIT Gastrointestinal Enteral Feeding  
FACIT Gastrointestinal Esophageal cancer  
FACIT Gastrointestinal Incontinence Therapy - Fecal  
PhenX Gastrointestinal Gastrointestinal Laboratory tests and medical history related to gastrointestinal health.
FACIT Infectious Diseases and Immunity HIV Infection  
GEM Infectious Diseases and Immunity HIV/AIDS  
PhenX Infectious Diseases and Immunity Infectious Diseases and Immunity Laboratory tests for a variety of infectious diseases.
EDRN Laboratory Tests Blood Details of specimen preparation and storage.
EDRN Laboratory Tests Bone Marrow Cell count, blast cells, and plasma cells.
EDRN Laboratory Tests Cystoscopy Details on cystoscopy.
EDRN Laboratory Tests Imaging Specific results for various types of medical imaging.
EDRN Laboratory Tests Labs Results for a variety of laboratory tests.
EDRN Laboratory Tests Nipple Aspirate Details of specimen preparation and storage.
EDRN Laboratory Tests Specimen Details of specimen preparation and storage.
EDRN Laboratory Tests Specimen Collection Details of specimen preparation and storage.
EDRN Laboratory Tests Sputum Details of specimen preparation and storage.
EDRN Laboratory Tests Tissue Details of specimen preparation and storage.
NDAR Laboratory Tests DTI  
NDAR Laboratory Tests fMRI  
NDAR Laboratory Tests Gen Test  
NDAR Laboratory Tests MRI  
NDAR Laboratory Tests Spectroscopy  
EDRN Medical History Family Medical History Specific details about family medical history.
EDRN Medical History Family Member Number of different types of family members.
EDRN Medical History Medical History Extensive set of medical history questions, including general questions and those related to cancer.
EDRN Medical History Personal History Additional medical history questions.
EDRN Medical History Surgical History Date and details of previous biopsies and other surgeries.
EDRN Medical History Systemic Medical history of immunological conditions.
FACIT Medical History EGFR Inhibitors  
FACIT Medical History Non-Life Threatening Conditions  
GEM Medical History Obesity  
GEM Medical History Sleep  
GEM Medical History Transplant  
GRDR Medical History Diagnosis Details on the subject’s rare disease diagnosis and when it was diagnosed.
GRDR Medical History Family History Guidelines on collecting information about family members with the same rare disease or condition as the subject.
NDAR Medical History Diagnostic  
NDAR Medical History Medical History  
NDAR Medical History Treatment  
NINDS Medical History General Information applicable to studies involving a wide range of neurological disease and conditions, including demographics, medical history, treatment and intervention, and safety.
EDRN Medications, Devices, and Treatments Medication Use Extensive set of questions about past and present medication use.
GRDR Medications, Devices, and Treatments Medications, Devices, and Health Services Subject’s current medications, medical food, and assistive devices as well as their history of hospitalizations and surgeries.
FACIT Neurology Multiple Sclerosis  
FACIT Neurology Neurotoxicity  
NINDS Neurology Amyotrophic Lateral Sclerosis  
NINDS Neurology Congenital Muscular Dystrophy  
NINDS Neurology Epilepsy  
NINDS Neurology Friedreich's Ataxia  
NINDS Neurology Frontotemporal Dementia  
NINDS Neurology Headache  
NINDS Neurology Huntington's Disease  
NINDS Neurology Multiple Sclerosis  
NINDS Neurology Neuromuscular Diseases  
NINDS Neurology Parkinson's Disease  
NINDS Neurology Spinal Cord Injury  
NINDS Neurology Stroke  
NINDS Neurology Traumatic Brain Injury  
PhenX Neurology Neurology Screens for particular neurological conditions and assesses memory.
GEM Nutrition and Dietary Supplements Nutrition  
PhenX Nutrition and Dietary Supplements Nutrition and Dietary Supplements Laboratory tests and history of the subject’s intake of nutrients.
PhenX Ocular Ocular Laboratory tests, family history, and medical history related to ocular health.
PhenX Oral Oral Health Laboratory tests and history related to oral health.
EDRN Physical Function Head and Neck  
FACIT Physical Function Anemia/Fatigue  
GEM Physical Function Physical Activity  
GRDR Physical Function Patient Reported Outcome Assessment of the subject’s physical functioning, pain, fatigue, and depression.
NDAR Physical Function Physical Exam  
Neuro-QOL Physical Function Lower Extremity Function - Mobility  
Neuro-QOL Physical Function Upper Extremity Function – Fine Motor, ADL  
NIH Toolbox Physical Function Motor Functioning Locomotion, non-vestibular balance, dexterity, strength.
NIH Toolbox Physical Function Sensation Vision, hearing, vestibular balance, smell, taste, touch.
PhenX Physical Function Physical Activity and Physical Fitness Assess physical fitness.
PROMIS Physical Function Mobility – Pediatric Measures activities of physical mobility such as getting out of bed or a chair to activities such as running.
PROMIS Physical Function Physical Function Measures self-reported capability rather than actual performance of physical activities.
PROMIS Physical Function Upper Extremity Function – Pediatric Measures self-reported capability of activities that require use of the upper extremity including shoulder, arm, and hand activities.
FACIT Physical Symptoms (incl. pain, fatigue) Bone Pain  
GEM Physical Symptoms (incl. pain, fatigue) Pain  
GRDR Physical Symptoms (incl. pain, fatigue) Patient Reported Outcome Assessment of the subject’s physical functioning, pain, fatigue, and depression.
Neuro-QOL Physical Symptoms (incl. pain, fatigue) Pain - Pediatric  
PROMIS Physical Symptoms (incl. pain, fatigue) Pain Behavior Measures external manifestations of pain, including observable displays, pain severity behaviors, and verbal reports of pain.
PROMIS Physical Symptoms (incl. pain, fatigue) Pain Intensity Measures pain intensity.
PROMIS Physical Symptoms (incl. pain, fatigue) Pain Interference Measures consequences of pain on relevant aspects of the subject’s life.
PROMIS Physical Symptoms (incl. pain, fatigue) Pain Interference – Pediatric Measures pain, divided into components of quality, interference with activities, and avoidance behaviors.
FACIT Psychiatric Anorexia/Cachexia - Pediatric  
FACIT Psychiatric Anorexia/Cachexia Treatment  
FACIT Psychiatric Chronic Illness Therapy - Fatigue  
FACIT Psychiatric Chronic Illness Therapy - Fatigue - Pediatric  
FACIT Psychiatric Chronic Illness Therapy - Palliative Care  
FACIT Psychiatric Chronic Illness Therapy - Spiritual Well-Being  
FACIT Psychiatric Cognitive function issues  
GRDR Psychiatric Patient Reported Outcome Assessment of the subject’s physical functioning, pain, fatigue, and depression.
Neuro-QOL Psychiatric Anger - Pediatric  
Neuro-QOL Psychiatric Anxiety  
Neuro-QOL Psychiatric Anxiety - Pediatric  
Neuro-QOL Psychiatric Applied Cognition - General Concerns - Pediatric  
Neuro-QOL Psychiatric Depression  
Neuro-QOL Psychiatric Depression - Pediatric  
Neuro-QOL Psychiatric Emotional and Behavioral Dyscontrol  
Neuro-QOL Psychiatric Fatigue  
Neuro-QOL Psychiatric Fatigue - Pediatric  
Neuro-QOL Psychiatric Sleep Disturbance  
PhenX Psychiatric Psychiatric Screens for particular psychiatric conditions.
PROMIS Psychiatric Anger Measures angry mood, negative social cognitions, and efforts to control anger. Physical aggression items are not included.
PROMIS Psychiatric Anger – Pediatric Measures angry mood and aggression (verbal and physical).
PROMIS Psychiatric Anxiety Measures fear, anxious misery, hyperarousal, and somatic symptoms related to arousal.
PROMIS Psychiatric Anxiety – Pediatric Measures fear, anxious misery, and hyperarousal.
PROMIS Psychiatric Applied Cognition – Abilities PROMIS is currently developing these data elements.
PROMIS Psychiatric Applied Cognition – Concerns PROMIS is currently developing these data elements.
PROMIS Psychiatric Depression Measures negative mood, views of self, and social cognition, as well as decreased positive affect and engagement. Somatic symptoms are not included.
PROMIS Psychiatric Depression – Pediatric Measures negative mood, decrease in positive affect, negative views of the self, and negative social cognition. Physical symptoms are not included.
PROMIS Psychiatric Fatigue Measures fatigue symptoms, from mild tiredness to debilitating exhaustion.
PROMIS Psychiatric Fatigue – Pediatric Measures fatigue using terms familiar to children such as “tired”.
PROMIS Psychiatric Illness Impact Negative Measures the direct negative psychosocial effect of cancer, distinct from general emotional distress.
PROMIS Psychiatric Illness Impact Positive Measures the positive emotional and social outcomes of illness that can occur as a result of confrontation with one’s mortality.
PROMIS Psychiatric Sleep Disturbance Measures perceptions of sleep quality, sleep depth, and restoration associated with sleep.
PROMIS Psychiatric Sleep-Related Impairment Measures perceptions of alertness, sleepiness, tiredness during usual waking hours.
FACIT Psychosocial Biologic Response Modifiers  
GEM Psychosocial Mental Health  
GEM Psychosocial Risk and Decision Making  
GEM Psychosocial Spirituality  
GEM Psychosocial Stress  
GEM Psychosocial Sexual Behaviors  
NDAR Psychosocial Behavior  
NDAR Psychosocial Cognitive  
NDAR Psychosocial IQ  
NDAR Psychosocial Social Responsiveness  
Neuro-QOL Psychosocial Ability to Participate in Social Roles and Activities  
Neuro-QOL Psychosocial Applied Cognition - Executive Function  
Neuro-QOL Psychosocial Applied Cognition - General Concerns  
Neuro-QOL Psychosocial Positive Affect and Well-Being  
Neuro-QOL Psychosocial Satisfaction with Social Roles and Activities  
NIH Toolbox Psychosocial Cognition Learning, memory, executive function, language/lexical retrieval, visuospatial abilities, attention, speed of processing.
NIH Toolbox Psychosocial Emotion Mood, adaptability, interpersonal relations, self- regulation.
PhenX Psychosocial Psychosocial Assesses the psychological and social health of the subject.
PROMIS Psychosocial Ability to Participate in Social Roles and Activities Measures the perceived ability to perform one’s usual social roles and activities.
PROMIS Psychosocial Satisfaction with Social Roles and Activities Measures satisfaction with performing one’s usual social roles and activities.
EDRN Reproductive Breast Breast cancer symptoms, detection, and treatment.
EDRN Reproductive Gynecologic Cervical and Histopathologic stage group.
EDRN Reproductive Menstrual History Information about menstrual history.
EDRN Reproductive Ovary FIGO Stage.
EDRN Reproductive Prostate Prostate biopsy information.
FACIT Reproductive Cervical Dysplasia  
GEM Reproductive Pregnancy  
GRDR Reproductive Birth and Reproductive History The subject’s own gestational history as well as the reproductive history of adult subjects.
PhenX Reproductive Reproductive Health Assesses sexual maturity, activity, and function, as well as fertility and reproductive health.
PROMIS Reproductive Sexual Function Measures sexual activity and satisfaction.
EDRN Respiratory Lung Lung conditions symptoms, detection, and treatment.
FACIT Respiratory Chronic Illness Therapy - Dyspnea  
PhenX Respiratory Respiratory Laboratory tests, family history, and medical history related to respiratory health.
PROMIS Respiratory Asthma Impact – Pediatric Measures asthma-specific symptoms such as cough, wheeze, shortness of breath, and avoidance of triggers. Also measures impacts such as missing school or other activities.
PhenX Skin, Bone, Muscle and Joint Skin, Bone, Muscle and Joint Laboratory tests, family history, and medical history related to health of skin, bone, muscle, and joints.
FACIT Social Environments Satisfaction with Pharmacist Scale  
Neuro-QOL Social Environments Social Relations - Interaction with Adults - Pediatric  
Neuro-QOL Social Environments Social Relations - Interaction with Peers - Pediatric  
Neuro-QOL Social Environments Stigma  
Neuro-QOL Social Environments Stigma - Pediatric  
PhenX Social Environments Social Environments Assesses positive and negative aspects of the subject’s socioeconomic environment.
PROMIS Social Environments Companionship Measures perceived availability of someone with whom to share enjoyable social activities.
PROMIS Social Environments Emotional Support Measures perceived feelings of being cared for and valued as a person.
PROMIS Social Environments Informational Support Measures perceived availability of helpful information or advice.
PROMIS Social Environments Instrumental Support Measures perceived availability of assistance with material, cognitive or task performance.
PROMIS Social Environments Peer Relationships – Pediatric Measures the quality of relationships with friends and other acquaintances.
PROMIS Social Environments Social Isolation Measures perceptions of being avoided, excluded, detached, disconnected from, or unknown by others.
NDAR Speech and Hearing Speech-Language  
Neuro-QOL Speech and Hearing Communication  
PhenX Speech and Hearing Speech and Hearing Laboratory tests, family history, and medical history related to speech and hearing.
EDRN Study Details Consent Subject authorization information.
EDRN Study Details Data Collection Date Dates of data collection from the subject.
EDRN Study Details Participant ID Study specific identifiers for a subject.
EDRN Study Details Process Specimen processing details.
EDRN Study Details Protocol Study and protocol details.
EDRN Study Details Result Results of observations or laboratory tests.
EDRN Study Details Site Details of study site and personnel.
FACIT Study Details Chronic Illness Therapy - Treatment Satisfaction - General  
FACIT Study Details Chronic Illness Therapy - Treatment Satisfaction - Patient Satisfaction  
GRDR Study Details Clinical Research Participation & Biospecimens Current, past and future participation of subject in clinical trials and biospecimens collection.
NDAR Study Details Exposure  
NDAR Study Details Questionnaire  
NDAR Study Details Summary  
NINDS Study Details General Information applicable to studies involving a wide range of neurological disease and conditions, including demographics, medical history, treatment and intervention, and safety.

 

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