Working...

Metadata Catalog

Expand to view filters

Browse By Data Element

Clinical status (25)
- Behavior (8)
  - Substance Use (8)
- Blood (23)
  - Acute Anemic Episode (3)
  - Aplastic Crisis (7)
  - Bleeding (2)
  - Other Blood Problem (5)
  - Sickle Cell Disease (23)
- Cancer (8)
  - Cancer (8)
- Cardiovascular (14)
  - Aneurysm (2)
  - Cardiac Failure (6)
  - Cardiovascular Problem (9)
  - Heart Problem (9)
- Digestive (14)
  - Gastrointestinal Problem (13)
  - Hepatitis (6)
  - Liver Problem (8)
- Endocrine (8)
  - Diabetes Mellitus (7)
  - Endocrine Problem (3)
- Family MedHx (7)
  - Family MedHx (7)
- General Health (4)
  - General Health (4)
- Genitourinary (16)
  - Genitourinary Problem (10)
  - Kidney Problem (12)
  - Priapism (14)
  - Renal Dialysis History (9)
- Immune (16)
  - Fever (7)
  - HIV Infection (4)
  - Immune Problem (6)
  - Infection (12)
  - Vaccination (6)
- Lymphatic (12)
  - Sarcoidosis (2)
  - Spleen Problem (12)
- Medical Event (19)
  - Adverse event (11)
  - Death (15)
  - Disability Status (4)
  - Hospitalization (4)
  - Medical Event (3)
  - Serious Adverse Event (10)
- Medical History (7)
  - Medical History (7)
- Mental Health (7)
  - Anxiety (3)
  - Depression (4)
  - Emotional Health (4)
  - Mental status (3)
  - Psychiatric Disorder (2)
- Musculoskeletal (15)
  - Musculoskeletal Problem (9)
  - Osteomyelitis (8)
  - Osteonecrosis (11)
  - Rheumatic Diseases (5)
- Neurodevelopmental (10)
  - Behavior (5)
  - Cognition (10)
  - Developmental (6)
  - Motor (8)
  - Sensation (5)
- Neurologic (17)
  - Meningitis (5)
  - Neurologic Event (10)
  - Seizure (10)
  - Stroke (16)
  - Transient Ischemic Attack (6)
- Nutritional and Metabolic (5)
  - Nutritional and Metabolic (5)
- Ocular (13)
  - Ocular Problem (8)
  - Sickle Retinopathy (8)
- Oral (1)
  - Oral Problem (1)
- Pain (18)
  - Abdominal Pain (3)
  - General Pain (10)
  - Headache (8)
  - Management (12)
  - Pain Attack (13)
  - Skeletal and Joint Pain (9)
- Reproductive (10)
  - Birth Outcome (3)
  - Gestational Age (3)
  - Menstruation (3)
  - Pregnancy (9)
  - Reproductive Behavior (4)
- Respiratory (19)
  - Acute Chest Syndrome (16)
  - Asthma (12)
  - Lung Disease (12)
  - Other Respiratory Problem (9)
- Skin (12)
  - Skin Problem (12)
- Sleep (9)
  - Sleep Problem (9)
- Surgery History (12)
  - Cardiovascular (2)
  - Digestive (6)
  - Genitourinary (4)
  - Lymphatic (9)
  - Musculoskeletal (3)
  - Ocular (1)
  - Respiratory (4)
  - Surgery History (6)
COVID-19 (1)
- Diagnosis (1)
  - COVID-19 (1)
  - Long COVID (1)
  - Symptoms (1)
  - Test (1)
- Impact (1)
  - Behaviors and Risks (1)
  - Healthcare (1)
  - Psychosocial and Mental Health (1)
- Treatment (1)
  - Hospitalization (1)
- Vaccination (1)
  - Vaccination booster (1)
  - Vaccination ever (1)
Demographics (29)
- Demographics (29)
  - Address (2)
  - Age (24)
  - Ethnic Group (18)
  - Gender (28)
  - Language (4)
  - National Origin (3)
  - Nuclear Family (4)
  - Race (24)
- Social Determinants of Health (SDoH) (4)
  - Community (3)
  - Individual (2)
- Socioeconomic Status (13)
  - Annual Income (10)
  - Education (11)
  - Employment Status (7)
  - Household (8)
  - Insurance (11)
  - Marital Status (6)
Environmental Exposure (5)
- Exposure (5)
  - Exposure (4)
  - Lead Poisoning (2)
Health Care (20)
- Acute Care Utilization (17)
  - Facility Type (12)
  - Provider Type (4)
  - Quality of Care (3)
  - Visit (11)
- Healthcare utilization (9)
  - Country of Care (1)
  - Facility Type (1)
  - Quality of Care (7)
- Health Services (2)
  - Provider (2)
  - Resource Implementation (2)
- Hospitalization (14)
  - Final Diagnosis (6)
  - Hospitalization (12)
  - ICU (5)
- SCD Management (2)
  - Technology Support (2)
Imaging (17)
- Angiogram (3)
  - Angiogram (3)
- Catheterization (1)
  - Right Heart Catheterization (1)
- CT Scan (8)
  - Abdomen (2)
  - Bone (2)
  - Brain (5)
  - Chest (1)
- Echocardiogram (9)
  - Echocardiogram (9)
- Electrocardiogram (ECG) (6)
  - Electrocardiogram (ECG) (6)
- Electrodiagnosis (2)
  - Electroencephalogram (2)
- General Imaging (6)
  - General Imaging (6)
- MRI/MRA (12)
  - Brain (11)
  - Heart (3)
  - Hip (1)
  - Liver (3)
- Nuclear Medicine Imaging (3)
  - Heart (1)
  - Kidney (2)
  - Liver (1)
  - Spleen (2)
- PET scan (3)
  - Brain (3)
- Transcranial Doppler (TCD) (10)
  - Brain (10)
- Ultrasound (2)
  - Abdomen (2)
  - Gallbladder (2)
  - Penis (1)
- X-Ray (4)
  - Abdomen (1)
  - Biliary Tract (1)
  - Chest (4)
  - Extremities (1)
  - Gallbladder (1)
  - Liver (1)
  - Skull (1)
Parent/Caretaker (9)
- Demographics (5)
  - Demographics (3)
  - Socioeconomic Status (4)
- Psychosocial (6)
  - Psychosocial (2)
  - Relationship (5)
- Quality of Life (4)
  - Quality of Life (4)
Quality of Life (14)
- General Health (2)
  - General Health (2)
- Pain (3)
  - Pain (3)
- Patient Functioning (12)
  - Cognitive Functioning (5)
  - Emotional Functioning (7)
  - Physical Functioning (11)
  - School Functioning (6)
  - Social Functioning (9)
- SCD (8)
  - SCD Impact (3)
  - SCD Management (6)
Tests (27)
- Biopsy (5)
  - Biopsy (5)
- Blood (26)
  - Blood Differential Test (14)
  - Blood Gases (11)
  - Blood Smear (2)
  - Blood Typing (7)
  - Coagulation Test (2)
  - Complete Blood Count (22)
  - Comprehensive Metabolic Panel (CMP) (17)
  - Enzyme (13)
  - General (7)
  - Hemoglobin Typing (20)
  - Iron (13)
- Cardiovascular (4)
  - Cardiovascular Test (4)
- Genitourinary (11)
  - Genitourinary Test (1)
  - Urine Test (11)
- Immune (4)
  - Serology (4)
- Microbiology Culture (4)
  - Blood Culture (4)
  - Microbiology Culture (1)
- Musculoskeletal (1)
  - Musculoskeletal Test (1)
- Neurologic (2)
  - Neurologic (2)
- Ocular (5)
  - Eye exam (5)
- Other (4)
  - Other (4)
- Physical Exam (20)
  - Abdomen (6)
  - Anthropometrics (19)
  - Cardiovascular (7)
  - Extremities (7)
  - General (10)
  - Liver (6)
  - Reproductive (2)
  - Respiratory (9)
  - Spleen (6)
  - Vital signs (18)
- Reproductive (2)
  - Pregnancy (2)
- Respiratory (11)
  - Pulmonary Function Test (11)
  - Respiratory Test (1)
Therapeutics (28)
- Medication (27)
  - Antibiotics (8)
  - Asthma (3)
  - Blood Medication History (5)
  - Cardiovascular (5)
  - Compliance (2)
  - Current Medication (7)
  - Depression Medication History (3)
  - Hydroxyurea (23)
  - Medication (15)
  - Neurologic Medication History (5)
  - Pain (11)
  - SCD Medication (9)
  - Sildenafil (1)
  - Supplements (2)
- Surgery (1)
  - Surgery Complication (1)
- Transfusion (21)
  - Blood Transfusion (20)
  - Chronic Transfusion (14)
  - Transfusion Complications (7)
- Transplantation (6)
  - Conditioning (3)
  - Transplantation (6)
- Treatment (11)
  - Discontinuation (1)
  - Oxygen (5)
  - Treatment (8)

Browse By PRO Measure

Functional Exercise Capacity (1)
- - 6-Minute Walk Test (1)
Mental Health (4)
- - ASCQ-Me Emotional Impact (1)
  - ASCQ-Me Social Functioning (1)
  - Brief Resiliency Scale (1)
  - NeuroQOL Fatigue (1)
  - NIH Toolbox Loneliness (1)
  - Pearlin Enhanced Self-Efficacy Scale (1)
  - Profile of Mood States (POMS) (2)
  - PROMIS Anxiety (1)
  - PROMIS Emotional Distress- Depression (1)
  - PROMIS Emotional Support (1)
  - PROMIS Fatigue (1)
  - PROMIS Global Mental Health (1)
Neurodevelopment (6)
- - Achenbach Child Behavior Checklist (CBCL) (1)
  - Bayley Scale of Infant and Toddler Development (1)
  - Behavior Rating Inventory of Executive Function (BRIEF) (2)
  - California Verbal Learning Test (2)
  - Children's Memory Scale (1)
  - Connor's Continuous Performance Test II (2)
  - Delis-Kaplan Executive Function System (D-KEFS) (1)
  - NeuroQOL Cognitive Function (1)
  - Peabody Picture Vocabulary Test (PPVT) (1)
Neuropsychological (6)
- - Adaptive Behavior Assessment System-II (1)
  - Adverse Childhood Experience Questionnaire (ACE-Q) (1)
  - Beery Developmental Test of Visual-Motor Integration (2)
  - Benton Tactile Form Perception Test (1)
  - Mini Mental Status Examination (MMSE) (1)
  - Oral Verbal Fluency Test (1)
  - Purdue Pegboard (SPA version) (1)
  - Test of Everyday Attention (TEA) (1)
  - Vineland Adaptive Behavior Summary (1)
  - Wechsler Intelligence Scales (5)
  - Wechsler Memory Scale (1)
  - Wisconsin Card Sorting Test (1)
  - Woodcock-Johnson Revised, Tests of Achievement (1)
  - Woodcock-Johnson, Revised, Tests of Cognitive Ability (1)
Pain (4)
- - ASCQ-Me Pain Episode (2)
  - ASCQ-Me Pain Impact (2)
  - ASCQ-Me Stiffness Impact (1)
  - Brief Pain Inventory (BPI) (1)
  - PROMIS Neuropathic Pain Quality (2)
  - PROMIS Nociceptive Pain Quality (1)
  - PROMIS Pain Interference (1)
Physical Exam (1)
- - Tanner Stage (1)
Psychosocial (2)
- - Experiences of Discrimination Scale (1)
  - Family Environment Scale (FES) (1)
  - Life Stressors and Social Resources Inventory - Youth (LISRES-Y) (1)
Quality of Care (2)
- - ASCQ-Me Quality of Care (QOC) (1)
  - Patient Satisfaction Questionnaire (PSQ) (1)
Quality of Life (8)
- - Child Health Questionnaire (CHQ) (1)
  - Ladder of Life (1)
  - Pediatric Quality of Life Inventory Child Report (ages 13-18) (1)
  - Pediatric Quality of Life Inventory Child Report (ages 8-12) (2)
  - Pediatric Quality of Life Inventory Parent Report for Child (ages 13-18) (1)
  - Pediatric Quality of Life Inventory Parent Report for Child (ages 8-12) (2)
  - PROMIS Global Physical Health (1)
  - PROMIS Self-Efficacy for Managing Medications and Treatment (2)
  - SF-36 Health Survey (4)
Sleep (1)
- - ASCQ-Me Sleep Impact (1)
Technology Support (1)
- - Mobile App Rating Scale (1)

Studies for the Selected Filter(s) (0)

Current Filters

No filters selected.

Study ID	Study Name	Acronym	Study PI	Data Location	No. Participants*

* Participants may have participated in multiple studies