An observational, multi-center, longitudinal registry study for Chinese pediatric patients with rheumatic and immunologic diseases.
Pediatric rheumatic and immunologic diseases severely impact the health of children and adolescents. Chinese Alliance of Pediatric Rheumatic \& Immunologic Diseases (CAPRID) was founded in 2022 to form a national collaboration for high-quality data-driven multi-center pediatric rheumatology and immunology research in China. The CAPRID Registry is an observational, multi-center, longitudinal registry for Chinese pediatric patients with rheumatic and immunologic diseases to explore the clinical phenotypes, diagnoses, complications, real-world drug safety, therapeutic efficacy, adverse events, critical illness and outcomes of Chinese pediatric patients with rheumatic and immunologic diseases. Hospital-based databases are established and standardized with Observational Medical Outcomes Partnership (OMOP) Common Data Model (CDM) for routine data collection. A web-based registry website is established with standardized electronic case report forms to register patients from CAPRID centers. A mobile application is created to allow long-term follow up and patient-reported outcome collection. The data captured in this registry reflects a "real world" situation with no intervention done outside the routine clinical practice. Treatment plans are determined by the investigator.
Study Type
OBSERVATIONAL
Enrollment
20,000
Peking Union Medical College Hospital
Beijing, Beijing Municipality, China
RECRUITINGBeijing Children's Hospital, Capital Medical University
Beijing, Beijing Municipality, China
RECRUITINGNumber of Enrolled Patients
Total number of patients with pediatric rheumatic and immunologic diseases enrolled in the registry
Time frame: up to 10 years
Physician Global Assessment
Visual Analog Score measurement of disease activity by physicians. The minimum value is 0 and the maximum is 10.
Time frame: up to 10 years
Patient or Parent Global Assessment
Visual Analog Score measurement of disease activity by patient's parent or patient him or her self (above 8 years old). The minimum value is 0 and the maximum is 10.
Time frame: up to 10 years
Proportion of Participants with Clinically Inactive Disease
Defined by normal disease activity indexes (if available) and normal inflammatory markers (erythrocyte sedimentation rate and C-reactive protein). Disease activity indexes include Systemic Lupus Erythematosus Disease Activity Index 2000 (SLEDAI-2K) for systemic lupus erythematosus; Juvenile Arthritis Disease Activity Score (JADAS)-27 for juvenile idiopathic arthritis, Pediatric Vasculitis Activity Score (PVAS) for vasculitis; Manual Muscle Testing(MMT)8, Childhood Myositis Assessment Scale (CMAS) for juvenile dermatomyositis, Sjögren's syndrome disease activity index (ESSDAI) for Sjögren's syndrome, Modified Rodnan Skin Score for scleroderma.
Time frame: up to 10 years
Childhood Health Assessment Questionnaire (CHAQ)
Composite measure of functional disability, score from 0 (no disability) to 3 (severe disability)
Time frame: up to 10 years
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Third Hospital of Peking University
Beijing, Beijing Municipality, China
RECRUITINGChidren's Hospital of Chongqing Medical University
Chongqing, Chongqing Municipality, China
RECRUITINGShenzhen Children's Hospital
Shenzhen, Guangdong, China
RECRUITINGThe University of Hong Kong Shenzhen Institute of Research and Innovation (HKU-SIRI)
Shenzhen, Guangdong, China
RECRUITINGThe Second Xiangya Hospital of Central South University
Changsha, Hunan, China
RECRUITINGChildren's Hospital of Nanjing Medical University
Nanjing, Jiangsu, China
RECRUITINGChildren's Hospital of Zhejiang University School of Medicine
Hangzhou, Zhejiang, China
RECRUITING