Study of the Natural History of Alport Syndrome by Establishment of an International Database

What this Trial Is About

Alport syndrome is a rare inherited condition that affects the kidneys, hearing, and eyes due to mutations in genes for type IV collagen chains in the kidney's filtering membrane. Researchers aim to better understand the natural history of this disease, including how kidney failure progresses, and to identify biomarkers that could predict kidney disease progression earlier than currently possible. The study also explores the impact of Alport syndrome on patients' education, work life, and treatment adherence, with collaboration across European countries and support from the French renal rare disease sector. This observational study involves creating a European database to collect detailed information on Alport syndrome patients. Data gathered includes kidney function measurements like estimated glomerular filtration rate (eGFR), urine analysis for blood and protein levels, hearing loss assessments, and eye examinations for related symptoms. The study also tracks blood pressure, treatment tolerance, and quality of life through questionnaires over multiple years. Participants will be followed through regular assessments at 1, 2, and 3 years to monitor kidney function, urine markers, hearing and eye health, blood pressure, and treatment safety. Researchers will also evaluate compliance with prescribed medications and the disease's overall impact on daily living. The study's goal is to collect comprehensive information to support future therapeutic trials and improve understanding of Alport syndrome progression.

Eurbio-Alport (RaDiCo Cohort) (RaDiCo Eurbio-Alport)