Background Until 2009, there was no national registration platform of rheumatism patients. Peking Union Medical College Hospital (PUMCH), together with several rheumatism centers, gradually established Chinese Rheumatism Data Center (CRDC).
Objectives The CRDC platform was established to record rheumatism patients' demographic characteristics, diagnosis, treatment and clinical information, which are necessary for clinical observational and cohort study to guide clinical decisions.
Methods Data is collected mainly through handwritten medical records and then uploaded in Chinese Rheumatology Information Platform web page. Scheduled visits to patients should be carried out according to disease types and patients' status. There should be at least one randomized visit every 6 months to ensure the quality of data.
Results Now 12 types of single diseases are covered, 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 take SLE as an example, the input information includes patients' basic information, medical history, laboratory examination, diagnosis, evaluation criteria, treatment and adverse events. The core data set of SLE patients is shown in Table 1.
As of now, 17,224 patients have been enrolled (Fig. 1), of which RA patients are the most common and followed by SLE patients (Fig. 2). Based on the SLE patients registered on CRDC database, papers on basic demographic characteristics and first symptom of Chinese SLE patients (1), risk factors of pulmonary hypertension (2), correlation between auto-antibodies and clinical manifestations (3) and related factors of fetal loss (4) have been published.
Conclusions In conclusion, CRDC is a national registry, which provides real-life data that improve clinical decision-making. At the same time, without additional work for the clinician, it provides a powerful research database.
Li M, Zhang W, Leng X, et al. Chinese SLE Treatment and Research group (CSTAR) registry: I. Major clinical characteristics of Chinese patients with systemic lupus erythematosus. Lupus 2013; 22:1192-9
Li M, Wang Q, Zhao J, et al. Chinese SLE Treatment and Research group (CSTAR) registry: II. Prevalence and risk factors of pulmonary arterial hypertension in Chinese patients with systemic lupus erythematosus. Lupus 2014; 23:1085-91
Li J, Leng XM, Li ZJ, et al. Chinese SLE Treatment and Research Group Registry: III. Association of Autoantibodies with Clinical Manifestations in Chinese Patients with Systemic Lupus Erythematosus. J Immunol Res 2014; 2014:809389
Tian XP, Li M, Ye Z, et al The related factors of fetal loss in Chinese women with Systemic Lupus Erythematosus: Data from Chinese SLE Treatment and Research group (CSTAR) registry IV. Int J Rheum Dis, 2014; Epub 2014 Dec 26
Disclosure of Interest None declared