MedTrace Logo

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

NCT02378805 · Status: RECRUITING · Type: OBSERVATIONAL · Enrollment: 800

Last updated 2025-03-06

No results posted yet for this study

Summary

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

  • Alport Syndrome
  • Hereditary Kidney Disease
  • Pediatric Kidney Disease
  • Thin Basement Membrane Disease
  • Familial Benign Hematuria

Interventions

DRUG

ACE-inhibitor

observational study

DRUG

Angiotensin-receptor blocker (ARB)

observational study

DRUG

HMG-Coenzyme inhibitor (statin)

observational study

DRUG

Spironolactone or Finerenone

observational study

DRUG

Paricalcitol

observational study!

DRUG

SGLT2 inhibitor

observational study

Sponsors & Collaborators

  • Society for Pediatric Nephrology (Germany)

    collaborator OTHER

  • University Hospital Goettingen

    lead OTHER

Principal Investigators

  • Oliver Gross, MD · University Hospital Goettingen

Eligibility

Sex
ALL
Healthy Volunteers
Yes

Timeline & Regulatory

Start
1995-07-31
Primary Completion
2036-03-01
Completion
2036-03-01

Countries

  • Germany

Study Locations

More Related Trials

Read the full study record

This page highlights key information. For complete eligibility criteria, study locations, investigator contacts, and the full protocol, visit the original record on ClinicalTrials.gov.

View NCT02378805 on ClinicalTrials.gov