Actively Recruiting
Alport Therapy Registry - European Initiative Towards Delaying Renal Failure in Alport Syndrome
Led by University Hospital Goettingen · Updated on 2025-03-06
800
Participants Needed
1
Research Sites
2122 weeks
Total Duration
On this page
Sponsors
U
University Hospital Goettingen
Lead Sponsor
S
Society for Pediatric Nephrology (Germany)
Collaborating Sponsor
AI-Summary
What this Trial Is About
The hereditary type IV collagen disease Alport syndrome leads to kidney failure early in life. Currently there are no specific medications approved for treatment, however, several therapies have been evaluated preclinically and could improve outcome. For that reason, this non-interventional, observational study investigates, if medications (1) delay disease progression; (2) delay time to kidney failure; (3) improve life-expectancy compared to untreated patients (relatives). This observational study started in 2006 as an European registry. Since 2019, this registry has been expanded to "Alport XXL" via the International Alport Alliance as a global effort across all continents. From 2020 on to present, "Alport XXL" has a special focus on the outcomes of early therapy in young patients on ACE-inhibitors vs. Angiotensin-receptor blockers vs. their combination.
CONDITIONS
Official Title
Alport Therapy Registry - European Initiative Towards Delaying Renal Failure in Alport Syndrome
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Diagnosis of Alport syndrome by kidney biopsy or mutation analysis (or both).
- Presence of any genetic variant for X-linked, autosomal, or digenic Alport syndrome affecting COL4A3, COL4A4, or COL4A5 genes.
You will not qualify if you...
- Patients not willing to give informed consent.
- Patients with suspected diagnosis that cannot be confirmed.
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Trial Site Locations
Total: 1 location
1
University Medical Center Göttingen
Göttingen, Lower Saxony, Germany, 37075
Actively Recruiting
Research Team
O
Oliver Gross, MD
CONTACT
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
6
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