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CRDC: a Chinese rheumatology research platform
Mengtao Li1, Xinping Tian, Wen Zhang
1Department of Rheumatology, Peking Union Medical College Hospital, Peking Union Medical College and Chinese Academy of Medical Sciences, Key Laboratory of Rheumatology and Clinical Immunology, Ministry of Education, No. 1 Shuaifuyuan, Beijing, 100730, China.
Insights
The Chinese Rheumatism Data Center (CRDC) collects real-world data on 12 rheumatic diseases, including systemic lupus erythematosus (SLE), from over 17,000 patients. This national registry aids clinical decision-making and research in rheumatology.
Area of Science:
- Rheumatology
- Clinical Data Management
- Epidemiology
Background:
- Established in 2011, the Chinese Rheumatism Data Center (CRDC) evolved from the Chinese Systemic Lupus Erythematosus (SLE) Treatment and Research Group (CSTAR).
- The CRDC operates under the direction of the National Health and Family Planning Commission of the PRC.
- It aims to collect comprehensive data on Chinese patients with rheumatic diseases.
Purpose of the Study:
- To introduce the development, structure, funding, data collection, and quality control of the CRDC.
- To summarize the data collected by the CRDC.
- To highlight the CRDC's role as a national registry for improving clinical decision-making and supporting research in rheumatology.
Main Methods:
- The CRDC comprises 300 registration sites and 50 regional sites.
- Data collection covers 12 rheumatic diseases, including SLE, RA, and AS.
- A mobile application facilitates efficient and high-quality data collection.
Main Results:
- The CRDC has enrolled 17,224 patients to date.
- Publications based on CRDC data include studies on SLE demographics, pulmonary hypertension risk factors, autoantibody correlations, and fetal loss.
- The registry provides real-world data for evidence-based diagnosis and treatment.
Conclusions:
- The CRDC is a powerful, national research database providing valuable real-life data for Chinese rheumatology studies.
- It supports clinical decision-making and research without imposing additional workload on clinicians.
- The mobile application ensures efficient data collection and high data quality for Chinese rheumatic patients.
Abstract:
This review introduces the history of development, organizational structure, funding resources, data collection, and quality control of the Chinese Rheumatism Data Center (CRDC) and summarizes the collection of data. In 2009, Peking Union Medical College Hospital (PUMCH), together with several rheumatism centers, established the Chinese Systemic Lupus Erythematosus (SLE) Treatment and Research Group (CSTAR) to collect data on Chinese patients for the study of SLE disease characteristics. In 2011, CSTAR was extended with the formation of the CRDC at PUMCH with direction from the National Health and Family Planning Commission of the PRC. The CRDC currently includes 300 registration sites and 50 regional sites that have successively begun to collect data on 12 rheumatic diseases, including systemic lupus erythematosus (SLE), rheumatoid arthritis (RA), ankylosing spondylitis (AS), systemic sclerosis, dermatomyositis, Takayasu arteritis, IgG4-related diseases, ANCA-associated vasculitis, gout, polyarteritis nodosa, unclassified systemic vasculitis, and Behcet disease. To date, 17,224 patients have been enrolled in the CRDC. Based on the SLE patients registered in the CRDC, papers investigating basic demographic characteristics and first symptom in Chinese SLE patients, risk factors of pulmonary hypertension, correlations between autoantibodies and clinical manifestations, and factors related to fetal loss have been published. The CRDC is a national registry that provides real-life data to improve clinical decision-making. At the same time, without additional work for the clinician, the CRDC is a powerful research database. The CRDC database provides sufficient information for Chinese clinical studies on rheumatology. Moreover, a mobile device application ensures convenient and efficient data collection without compromising data quality, thereby providing strong evidence-based data for the diagnosis and treatment of Chinese rheumatic patients.
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