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ID05470569

Argentinian Registry Study Tracking Patients With Systemic Lupus Erythematosus Over 5 Years

Led by Sociedad Argentina de Reumatologia · Updated on 2022-07-22

1500

Participants Needed

1

Research Sites

208 weeks

Total Duration

AI-Summary

What this Trial Is About

Researchers are conducting a long-term observational study to gather detailed information on patients with systemic lupus erythematosus SLE in Argentina. The study aims to describe the real-world setting of SLE patients, identify barriers to specialized care and treatment access, and collect data from multiple centers over a 5-year follow-up period. This project addresses the current lack of comprehensive data on SLE patients in Latin America. Participants diagnosed with SLE, meeting established criteria, will be followed annually for 5 years. Data collection includes sociodemographic information, clinical history, disease activity and damage scores, treatments used, patient-reported outcomes like quality of life, comorbidities, vaccination status, obstetric history, and hospitalizations. Experienced physicians will enter data into a specially designed electronic form to ensure accuracy and consistency. During the study, patients will have yearly clinical visits to monitor changes in disease status, treatments, healthcare use, and outcomes such as remission, mortality, and drug safety. Researchers will measure remission rates, patient quality of life, disease activity, damage accrual, treatment patterns, drug survival, and adverse events. The study will also assess healthcare resource use and accessibility to high-cost treatments, providing important insights into managing SLE in this population.

CONDITIONS

Brief Title

Argentinian Prospective Registry of Patients With Lupus

Research Team

G

Guillermo Pons-Estel, PhD

L

Lucila Garcia, PhD

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