Background To develop a new system to study the real-world clinical characteristics and remission of systemic lupus erythematosus based on the first and largest registry cohort in China.
Methods Based on previous experience of CSTAR registry from 2009, a new online platform through mobile application program (APP)was designed to continuously collect real-time data during clinical practice with predesigned case report form. Baseline and follow-up datawere directly collected by physician at clinic, uploaded via our APP and integrated into database for analysis immediately, including demography, clinical manifestations, disease activity (SLEDAI-2K), organ damage (SLICC Damage Index), lab results, imaging and medications. Biological samples were preserved for future study. Along with data collection, data cleaning and validation were managed by a professional backstage statistician to ensure quality.
Results A total of 13,699 SLE patients from 236 different centers have been registered up to December 2018. The male to female rate was 1:12 (1076/12,623). The average age at onset, at diagnosis and at enrollment were 30.7 y, 31.7 y and 35.5 y respectively. The top three involved organ systems at entry were lupus nephritis (36%), hematologic involvement (35.8%) and neuropsychiatric disorder (5.7%). In addition, 637 patients (4.6%) were found to be diagnosed with pulmonary arterial hypertension, and 166 patients (1.2%) had interstitial lung disease at baseline. The rate of clinical remission and complete remission at latest follow-up were 3.2% and 2.8%.
Conclusions CSTAR firstly built a direct online reporting and collecting system, which can continuously register and follow SLE patients all around China, giving us an opportunity to study the real-world conditions and provide the possibility to apply Treat-To-Target strategy into daily practice for Chinese SLE patients
Funding Source(s): Chinese National Key Research R and D Program (2017YFC0907601, 2017YFC0907602, 2017YFC0907603), the Chinese National High Technology Research and Development Program, Ministry of Science and Technology (2012AA02A513) and the Chinese National Key Technology R and D Program, Ministry of Science and Technology (2008BAI59B02).
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