National registry for idiopathic retroperitoneal fibrosis in China
Official title: National Registry of Idiopathic Retroperitoneal Fibrosis in China
Run by Peking Union Medical College Hospital · NCT04314323 · Data updated 2026-11-12
This study is trying to gather information from patients with idiopathic retroperitoneal fibrosis in China to better understand the condition and its effects on people's health.
Quick facts
| Study type | Observational |
|---|---|
| Ages | 18 Years to 75 Years |
| Sex | All |
| Enrollment | 500 (estimated) |
| Sponsor | Peking Union Medical College Hospital Academic / other |
| Locations | 1 site (Beijing, Beijing Municipality) |
| Status | Recruiting |
| Started | March 17, 2020 |
| Main results expected | March 2030 |
| Study ends | March 2030 |
| Registry record updated | March 19, 2020 |
| Trial ID | NCT04314323 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a good fit
Ideal candidates for this study are patients with newly diagnosed idiopathic retroperitoneal fibrosis who meet specific diagnostic criteria.
✕Probably not a fit
Patients with secondary forms of retroperitoneal fibrosis or those with malignancies will not benefit from this study.
A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.
What this trial studies
This observational study aims to establish a nationwide cohort of patients diagnosed with idiopathic retroperitoneal fibrosis (IRPF) across multiple centers in China. Patients meeting the diagnostic criteria for IRPF will be enrolled, and their clinical manifestations, demographic features, laboratory characteristics, and treatment outcomes will be recorded in an online database. The study seeks to provide a comprehensive understanding of IRPF in the Chinese population, focusing on both primary and secondary endpoints related to the disease's characteristics and prognosis.
Why it matters
Potential benefit: If successful, this study could enhance the understanding and management of idiopathic retroperitoneal fibrosis, leading to improved patient outcomes.
How similar studies have gone: While this study is a novel approach in establishing a national registry for IRPF, similar cohort studies have shown success in other conditions.
Who can join: the full rules
Show full inclusion / exclusion criteria
Inclusion Criteria: * Conforming to the diagnostic criteria of IRPF;Definite IRPF must have the following characteristics: (1) The typical finding of Imaging shows retroperitoneal mass, surrounding the abdominal aorta and iliac arteries, with encasement of ureters and/or organ dysfunction; (2) Exclusion of disease progression after standard glucocorticoid treatment; and (3) histopathological findings shows a fibrous tissue with signs of chronic inflammation. The inflammatory component is comprised of lymphocytes, plasma cells and macrophages. Neutrophils and granulomas are rare findings. Possible IRPF required (1) and (2), but without histopathological examination. Exclusion Criteria: * None of them met the criteria for other autoimmune diseases. None had malignant disease. Secondary forms of RPF related to drugs, infections, malignancies, Erdheim-Chester disease and IgG4-RD, need to be excluded.
Where it's running
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Peking Union Medical College Hospital
Beijing, Beijing Municipality, China Recruiting
Study contacts
- Study coordinator: Yunyun Fei
- Email: feiyunyun2013@hotmail.com
- Phone: +8613681125226
Similar studies
Other studies for the same condition or treatment. Recruiting studies are listed first.
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Stopping steroid treatment early in patients with idiopathic retroperitoneal fibrosis
This study tests if stopping steroid treatment early can be safe and effective for adults with idiopathic retroperitoneal fibrosis.
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Cohort study of idiopathic retroperitoneal fibrosis in China
This study looks at how idiopathic retroperitoneal fibrosis affects patients in China and how they respond to different treatments.
-
National Registry for Rare Kidney Diseases
This study is collecting health information from people with rare kidney diseases to help improve treatments and create better care guidelines.
How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.