National Registry of Idiopathic Retroperitoneal Fibrosis in China

What this Trial Is About

Researchers are conducting a multicenter registry study to create a nationwide database of idiopathic retroperitoneal fibrosis (IRPF) patients across China. The study aims to understand the clinical signs and organ involvement of IRPF in Chinese patients, along with demographic, laboratory, immunological, imaging, pathological features, treatment responses, and prognosis. Patients newly diagnosed with IRPF, excluding those with secondary forms or malignancies, are included to provide comprehensive data on this condition. Newly diagnosed IRPF patients from multiple centers in China will be enrolled, and their information will be entered into an online database via the Chinese Rheumatology Information Platform. Data collected include demographic details, symptoms, disease duration, allergy history, physical exams, organ involvement, laboratory and radiological findings, pathology results, treatments, and side effects. The study is observational and does not involve experimental treatments. Participants will provide informed consent and undergo routine data collection over the study period. Researchers will analyze organ involvement as the primary outcome over five years, with secondary outcomes including treatment response rates, relapse rates, correlations between disease activity and relapse, imaging features, and ten-year survival rates. The study involves continuous monitoring and data analysis to improve understanding of IRPF in the Chinese population.

National Registry of IRPF in China