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

Recruitingn/aAges any - anyAllUniversity Hospital Goettingen
NCT02378805 on ClinicalTrials.gov ↗
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In plain words

What the trial is, and whether it could suit you

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.

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📋 Eligibility rules (as published)
Inclusion Criteria: 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). Exclusion criteria: Patients not willing to give informed consent. Patient with suspected diagnosis, whcih cannot be confirmed.
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What it tests

  • ACE-inhibitor
  • Angiotensin-receptor blocker (ARB)
  • HMG-Coenzyme inhibitor (statin)
  • Spironolactone or Finerenone
  • Paricalcitol
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Where

1 site
University Medical Center Göttingen
Göttingen, Germany
🤝 Taking part is your choice, and you can leave at any time. Only the trial team can confirm you are eligible — always decide together with your own doctor.
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