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220 Clinical characteristics and remission of patients with systemic lupus erythematosus in china: results from SLE treatment and research group (CSTAR) registry with a real-time collecting system
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  1. Ziqian Wang1,
  2. Mengtao Li2,
  3. Jiuliang Zhao2,
  4. Qian Wang2 and
  5. Xiaofeng Zeng2
  1. 1Peking Union Medical College Hospital
  2. 2Department of Rheumatology, Peking Union Medical College Hospital, Peking Union Medical College and Chinese Academy of Medical Science, Key Laboratory of Rheumatology and Clinical Immunology, Ministry of Education, Beijing, China

Abstract

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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