Background A new real-time collecting system were set up from 2017 based on the first registry cohort in China. This study was an update on the clinical features and remission status of recent results.
Methods CSTAR registry was first launched in 2009. Based on CSTAR, a new mobile application program (APP) platform was established to collect real-time data in clinic with predesigned electronic case report form. All data were generated and uploaded in clinic directly without secondary collection, 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 at first clinic visit. Meanwhile, data cleaning and validation was managed by a professional backstage statistician.
Results A total of 22807 SLE patients from 295 different centers have been registered up to Sep 2019. Male to female rate was 1:12. The most common manifestations at entry were mucocutaneous (59.8%), arthritis (55.3%), hematologic (37.9%) and lupus nephritis (34.6%). In addition, neuropsychiatric disorder and pulmonary arterial hypertension took up for 5.4% respectively. 399 patients (1.7%) had interstitial lung disease at baseline. The prevalence rate of coronary artery disease and cerebrovascular disease were both 0.7%. The percentage of combined malignancy was 0.6%. 57.6% of the patients were in remission at entry, and 19.6% of the patients had developed irreversible organ damage at baseline.
Conclusion The direct online reporting and collecting system of CSTAR had expanded with more than 20,000 patients involved all around China, showing us current situation of clinical practice for SLE in China and what we have achieved by applying Treat-To-Target strategy into daily practice for Chinese SLE patients.
Keywords Systemic Lupus Erythematosus, cohort, clinical features, remission
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