Registry for delaying kidney failure in Alport syndrome

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

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.

Why it matters

Who can join: the full rules

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 it's running

• University Medical Center Göttingen
  Göttingen, Lower Saxony, Germany Recruiting

Study contacts

• Principal investigator: Oliver Gross, MD — University Hospital Goettingen
• Study coordinator: Oliver Gross, MD
• Email: gross.oliver@med.uni-goettingen.de
• Phone: +49-551-39-

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

• Registry for patients with Alport syndrome

  This study is creating a registry for people with Alport syndrome to share their health information, which will help researchers learn more about the condition and develop new treatments.

  Recruiting Alport Syndrome Foundation · Scottsdale, Arizona · NCT06526741

• Periodontal Health in Rare Kidney Conditions and Controls

  This study tests how common periodontitis is in people with rare kidney disorders and compares it to CKD patients and people without kidney disease.

  Recruiting Institutul Clinic Fundeni · Bucharest · NCT07575347

• Non-Invasive Monitoring of Pediatric Kidney Transplant Recipients and Personalization of Immunosuppression

  This study tests whether non-invasive biomarkers can guide care in kids with kidney transplants to reduce biopsies and tailor immunosuppressive drug exposure.

  Recruiting Assistance Publique - Hôpitaux de Paris · Paris · NCT06761482

• Testing a medication for children with chronic kidney disease

  This study is testing if a new kidney medication can help children with chronic kidney disease feel better and improve their health over three months.

  Recruiting Early Phase 1 Ann & Robert H Lurie Children's Hospital of Chicago · Chicago, Illinois · NCT06430684

• National Registry for Rare Kidney Diseases

  This study is collecting health information from people with rare kidney diseases to help improve treatments and create better care guidelines.

  Recruiting UK Kidney Association · Bristol, South West · NCT06065852

• Observational study on Alport Syndrome

  This study is looking at how Alport syndrome affects people over time and whether new treatments that worked in animals can help improve their health and quality of life.

  Recruiting Institut National de la Santé Et de la Recherche Médicale, France · Paris, Île-de-France Region · NCT05927467

How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.