System Maintenance Notice

Please note that maintenance work is scheduled between 4 AM and 5 AM - CET. During this time, you may experience reduced performance. Thanks for your patience.

Studies

Observational Not yet recruiting

NCT07168746 on ClinicalTrials.gov

National Cohort of Patients With SITRAME Syndrome

  • Sponsor: Assistance Publique - Hôpitaux de Paris
  • Enrollment: 100 (Estimated)
  • Study start: 2025-09-01 (Estimated)
  • Primary completion: 2025-09-01 (Estimated)
  • Study completion: 2055-09-01 (Estimated)
  • Allocation: N/a
  • InterventionModel: N/a
  • Masking: None
  • PrimaryPurpose: Other

Brief Summary

SITRAME syndrome is a recently described disease. In the absence of epidemiological data on SITRAME syndrome in France, the National Reference Center for Autoinflammatory Diseases proposes coordinating a database to collect both retrospective and prospective cases of this rare disease.

Currently, there are no available data on the epidemiology or treatment of SITRAME syndrome in France or globally. The importance of this research is to provide an overview of demographic, etiological, and disease progression data for patients with SITRAME syndrome in France. This will allow the establishment of quantitative data on the morbidity and mortality of this rare disease.

Conditions

  • Auto Inflammatory Diseases

Primary Outcome Measures

  • Description of the sexe at the diagnosis of the disease in order to describe the clinical characteristics of patients followed for SITRAME syndrome (Day 0- Baseline)
  • Description of the age at the diagnosis of the disease (Day 0- Baseline)
    Description of the age at the diagnosis of the disease in order to describe the clinical characteristics of patients followed for SITRAME syndrome
  • Description of cardiovascular co-morbidity (Day 0- Baseline)
    Description of cardiovascular co-morbidity at the diagnosis of the disease in order to describe the clinical characteristics of patients followed for SITRAME syndrome
  • Description of presence of an allergical context (Day 0- Baseline)
    Description of presence of an allergical context in order to describe the clinical characteristics of patients followed for SITRAME syndrome
  • Description of the different therapeutic lines (Year 15)
    Description of the different therapeutic lines in order to describe the clinical characteristics of patients followed for SITRAME syndrome
  • Description of the age at death (Day 0- Baseline)
    Description of the age at death in order to describe the clinical characteristics of patients followed for SITRAME syndrome

Study Officials