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| ID | Type | Description | Link |
|---|---|---|---|
| 2021YFC2702000 | Other Grant/Funding Number | National Key R&D Program of China |
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| Name | Class |
|---|---|
| Children's Hospital of Chongqing Medical University | OTHER |
| Central South University | OTHER |
| Beijing Children's Hospital | OTHER |
| Shenzhen Children's Hospital |
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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.
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| Measure | Description | Time Frame |
|---|---|---|
| Number of Enrolled Patients | Total number of patients with pediatric rheumatic and immunologic diseases enrolled in the registry | up to 10 years |
| Measure | Description | Time Frame |
|---|---|---|
| Physician Global Assessment | Visual Analog Score measurement of disease activity by physicians. The minimum value is 0 and the maximum is 10. | up to 10 years |
| Patient or Parent Global Assessment |
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Inclusion Criteria:
Exclusion Criteria:
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Chinese children with pediatric rheumatic and immunologic diseases enrolled from CAPRID centers.
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Sihao Gao | Contact | (+86) 010-6915-5727 | sihao.gao@gmail.com |
| Name | Affiliation | Role |
|---|---|---|
| Hongmei Song, MD | Peking Union Medical College Hospital | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Peking Union Medical College Hospital | Recruiting | Beijing | Beijing Municipality | 100730 | China |
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| Label | URL |
|---|---|
| The Official Website for Chinese Alliance of Pediatric Rheumatic \& Immunologic Diseases (CAPRID) | View source |
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| ID | Term |
|---|---|
| D001327 | Autoimmune Diseases |
| D008180 | Lupus Erythematosus, Systemic |
| D001171 | Arthritis, Juvenile |
| D014657 | Vasculitis |
| D003882 | Dermatomyositis |
| D012859 | Sjogren's Syndrome |
| D045743 | Scleroderma, Diffuse |
| ID | Term |
|---|---|
| D007154 | Immune System Diseases |
| D003240 | Connective Tissue Diseases |
| D017437 | Skin and Connective Tissue Diseases |
| D001168 | Arthritis |
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| OTHER_GOV |
| Children's Hospital of Nanjing Medical University | OTHER |
| The University of Hong Kong | OTHER |
| Zhejiang University | OTHER |
| Peking University Third Hospital | OTHER |
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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.
| 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. | up to 10 years |
| Childhood Health Assessment Questionnaire (CHAQ) | Composite measure of functional disability, score from 0 (no disability) to 3 (severe disability) | up to 10 years |
| Beijing Children's Hospital, Capital Medical University | Recruiting | Beijing | Beijing Municipality | China |
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| Third Hospital of Peking University | Recruiting | Beijing | Beijing Municipality | China |
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| Chidren's Hospital of Chongqing Medical University | Recruiting | Chongqing | Chongqing Municipality | China |
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| Shenzhen Children's Hospital | Recruiting | Shenzhen | Guangdong | China |
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| The University of Hong Kong Shenzhen Institute of Research and Innovation (HKU-SIRI) | Recruiting | Shenzhen | Guangdong | China |
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| The Second Xiangya Hospital of Central South University | Recruiting | Changsha | Hunan | China |
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| Children's Hospital of Nanjing Medical University | Recruiting | Nanjing | Jiangsu | China |
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| Children's Hospital of Zhejiang University School of Medicine | Recruiting | Hangzhou | Zhejiang | China |
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| D007592 | Joint Diseases |
| D009140 | Musculoskeletal Diseases |
| D012216 | Rheumatic Diseases |
| D014652 | Vascular Diseases |
| D002318 | Cardiovascular Diseases |
| D017285 | Polymyositis |
| D009220 | Myositis |
| D009135 | Muscular Diseases |
| D009468 | Neuromuscular Diseases |
| D009422 | Nervous System Diseases |
| D012871 | Skin Diseases |
| D001172 | Arthritis, Rheumatoid |
| D014987 | Xerostomia |
| D012466 | Salivary Gland Diseases |
| D009059 | Mouth Diseases |
| D009057 | Stomatognathic Diseases |
| D015352 | Dry Eye Syndromes |
| D007766 | Lacrimal Apparatus Diseases |
| D005128 | Eye Diseases |
| D012595 | Scleroderma, Systemic |