Observational Study of Pediatric Rheumatic and Immunologic Diseases in China: The CAPRID Registry
For patients and families
In plain language
An automatic summary of structured registry data. It is an orientation aid, not a substitute for the official protocol or a physician assessment.
- What is being studied
- This is an observational study: the protocol does not assign a study treatment.
- Who it may be relevant to
- Registry conditions: Autoimmune Diseases, Autoinflammatory Diseases. Basic parameters: up to 18 years · All.
- What needs checking
- Age, condition and sex are only basic indicators. Prior treatment, laboratory values and other mandatory requirements appear in the eligibility criteria below.
- Where it takes place
- China
- Next step
- Save the trial, show it to the treating physician, and confirm current recruitment with the study center. Costs, documents and travel →
Unsure about the terms? Read our patient guide →
Overview
An observational, multi-center, longitudinal registry study for Chinese pediatric patients with rheumatic and immunologic diseases.
Detailed description
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.
Primary outcome measures
- Number of Enrolled Patients [Time frame: up to 10 years]
Secondary outcome measures (4)
- Physician Global Assessment [Time frame: up to 10 years]
- Patient or Parent Global Assessment [Time frame: up to 10 years]
- Proportion of Participants with Clinically Inactive Disease [Time frame: up to 10 years]
- Childhood Health Assessment Questionnaire (CHAQ) [Time frame: up to 10 years]
Eligibility criteria
Inclusion criteria
- Age <= 18 years old
- Diagnosed with rheumatic and immunologic diseases (including diffuse connective tissue diseases, arthritis, vasculitis, inborn errors of immunity)
- Diagnosed and Treated in China
Exclusion criteria
- Disagreement of involving in this study by the patient or his/her family.
Criteria are shown verbatim from the registry (in English). Final eligibility is always assessed by the study center.
Healthy volunteers: No
Study design
- Observational model
- Cohort
Study locations
China · 9 centers
- Peking Union Medical College Hospital — Beijing
- Beijing Children's Hospital, Capital Medical University — Beijing
- Third Hospital of Peking University — Beijing
- Chidren's Hospital of Chongqing Medical University — Chongqing
- Shenzhen Children's Hospital — Shenzhen
- The University of Hong Kong Shenzhen Institute of Research and Innovation (HKU-SIRI) — Shenzhen
- The Second Xiangya Hospital of Central South University — Changsha
- Children's Hospital of Nanjing Medical University — Nanjing
- … and 1 more center
Identifiers
NCT: NCT06417502 · JS-3362D · 2021YFC2702000