Registry for delaying kidney failure in Alport syndrome

European Alport Therapy Registry - European Initiative Towards Delaying Renal Failure in Alport Syndrome: Current and Novel Therapies

This study is collecting information from patients with Alport syndrome to see if different medications can help delay kidney failure and improve their quality of life.

Quick facts

• Study type: Observational
• Enrollment: 800 (estimated)
• Sex: All
• Sponsor: University Hospital Goettingen (Academic / other)
• Locations: 1 site (Göttingen, Lower Saxony)
• Trial ID: NCT02378805 on ClinicalTrials.gov

What this trial studies

This observational registry collects data on patients with Alport syndrome to evaluate the effectiveness of various medications in delaying disease progression and kidney failure. It focuses on early intervention in young patients, comparing the outcomes of ACE-inhibitors, Angiotensin-receptor blockers, and their combinations. The registry has been expanded globally through the International Alport Alliance, allowing for a comprehensive analysis of treatment approaches across different populations. By tracking the health outcomes of patients over time, the study aims to improve life expectancy and quality of life for those affected by this hereditary kidney disease.

Who should consider this trial

Good fit: Ideal candidates include children diagnosed with Alport syndrome confirmed by kidney biopsy or genetic testing.

Not a fit: Patients who do not have a confirmed diagnosis of Alport syndrome or are unwilling to provide informed consent may not benefit from this study.

Why it matters

Potential benefit: If successful, this initiative could lead to improved treatment strategies that significantly delay kidney failure in patients with Alport syndrome.

How similar studies have performed: Other studies have shown promising results with early intervention in hereditary kidney diseases, suggesting that this approach may be effective.

Eligibility criteria

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.

Where this trial is running

Göttingen, Lower Saxony

• University Medical Center Göttingen — Göttingen, Lower Saxony, Germany (Recruiting)

Study contacts

• Principal investigator: Oliver Gross, MD — University Hospital Goettingen
• Study coordinator: Oliver Gross, MD

Conditions Alport Syndrome; Hereditary Kidney Disease; Pediatric Kidney Disease; Thin Basement Membrane Disease; Familial Benign Hematuria; Alport syndrome; thin basement membrane disease; familial benign hematuria