Observational study on Alport Syndrome
Official title: Study of the Natural History of Alport Syndrome by Establishment of an International Database
Run by Institut National de la Santé Et de la Recherche Médicale, France · NCT05927467 · Data updated 2026-11-12
This study is looking at how Alport syndrome affects people over time and whether new treatments that worked in animals can help improve their health and quality of life.
Quick facts
| Study type | Observational |
|---|---|
| Sex | All |
| Enrollment | 700 (estimated) |
| Sponsor | Institut National de la Santé Et de la Recherche Médicale, France Government |
| Locations | 1 site (Paris, Île-de-France Region) |
| Status | Recruiting |
| Started | May 9, 2017 |
| Main results expected | September 30, 2027 |
| Study ends | September 30, 2027 |
| Registry record updated | September 21, 2026 |
| Trial ID | NCT05927467 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a good fit
Ideal candidates for this study are individuals diagnosed with Alport syndrome through renal biopsy or molecular studies.
✕Probably not a fit
Patients without a confirmed diagnosis of Alport syndrome 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 focuses on Alport syndrome, a rare inherited condition that leads to kidney failure, hearing loss, and eye issues. It aims to gather comprehensive data on the progression of the disease and the effectiveness of potential therapies, including those that have shown promise in animal models. The study will utilize a European database to analyze patient outcomes and quality of life, contributing to a better understanding of the disease's natural history and informing future therapeutic trials.
Why it matters
Potential benefit: If successful, this study could enhance understanding of Alport syndrome and improve treatment strategies for affected patients.
How similar studies have gone: While there have been retrospective studies indicating potential treatment avenues, this study represents a novel approach to understanding the disease's progression in a European context.
Who can join: the full rules
Show full inclusion / exclusion criteria
Inclusion Criteria: * Diagnosis of AS based on electron microscopic examination of the renal biopsy and/or molecular studies and/or abnormal expression of type IV collagen chains on skin and/or glomerular basement membranes. * Signed informed consent Exclusion Criteria: \- No exclusion criteria
Where it's running
-
RaDiCo Eurbio-Alport
Paris, Île-de-France Region, France Recruiting
Study contacts
- Principal investigator: Laurence Heidet, PHD — Inserm U933
- Study coordinator: Laurence Heidet, PHD
- Email: laurence.heidet@aphp.fr
- Phone: 0033 1 44 49 43 82
Similar studies
Other studies for the same condition or treatment. Recruiting studies are listed first.
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Periodontal Health in Rare Kidney Conditions and Controls
This study tests how common periodontitis is in people with rare kidney disorders and compares it to CKD patients and people without kidney disease.
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Registry for patients with Alport syndrome
This study is creating a registry for people with Alport syndrome to share their health information, which will help researchers learn more about the condition and develop new 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.
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Treatment of pediatric kidney diseases with Sparsentan
This study is testing if a new oral medication called Sparsentan can help children aged 1 to 18 with certain kidney diseases feel better and improve their condition over two years.
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Understanding genetic factors in Alport Syndrome
This study is trying to see how certain gene changes in families with Alport syndrome affect kidney problems and hearing loss.
-
NEPTUNE Match: Personalized matching of patients to kidney treatment options
This project will try a system that matches people in the NEPTUNE cohort who have nephrotic syndromes or related kidney diseases with suitable clinical trials and shares those matches with patients and their doctors.
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.