Alport Therapy Registry - European Initiative Towards Delaying Renal Failure in Alport Syndrome

Recruiting now

Conditions studied: Alport Syndrome, Hereditary Kidney Disease, Pediatric Kidney Disease, Thin Basement Membrane Disease, Familial Benign Hematuria

In brief

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.

Key facts

Study ID: NCT02378805
Run by: University Hospital Goettingen
People needed: 800
Starts: 1995-07-01
Expected to finish: 2036-03-01
Last updated by the study team: 2025-03-06

Who can join

Age: any. Sex: any. Healthy volunteers: accepted.

You may qualify if…

Diagnosis of Alport syndrome (AS) by kidney biopsy or mutation analysis (or both).
Any type of genetic variant is accepted for X-linked, autosomal or digenic Alport syndrome (COL4A3, 4 or 5 genes).

You may not qualify if…

Patients not willing to give informed consent. Patient with suspected diagnosis, whcih cannot be confirmed.

Where it is running

University Medical Center Göttingen — Göttingen, Lower Saxony, Germany (enrolling)

Full record on ClinicalTrials.gov

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