Alport Syndrome Treatments and Outcomes Registry

Phase

N/A

Condition

Alport's Syndrome

Kidney Failure (Pediatric)

Nephropathy

Treatment

N/A

Clinical Study ID

NCT00481130

0704M05941

Ages < 99
All Genders

Study Summary

ASTOR's primary purpose is to enroll families and patients with a history of Alport syndrome in a central registry. The information we gather will be used as a basis for studies designed to test potential treatments for Alport syndrome. ASTOR also aims to provide patients, families and physicians with the most up-to-date information about Alport syndrome.

Eligibility Criteria

Inclusion

Inclusion Criteria: History of a diagnosis of Alport syndrome, Family or individuals need to be able to comprehend the consent and HIPAA forms written in the English language.

Exclusion

Exclusion Criteria: Uncertain diagnosis of Alport syndrome.

Study Design

September 01, 2007

November 17, 2025

Study Description

The University of Minnesota's Department of Pediatrics has created the Alport Syndrome Treatments and Outcomes Registry (ASTOR). ASTOR's primary purpose is to enroll families and patients with a history of Alport syndrome in a central registry. The information we gather will be used as a basis for studies designed to test potential treatments for Alport syndrome. ASTOR also aims to provide patients, families and physicians with the most up-to-date information about Alport syndrome.

You can help doctors learn more about Alport syndrome and test possible treatments for the disease by enrolling in ASTOR. Since Alport syndrome is a rare disease it is essential for ASTOR to enroll as many patients as possible. Together, you and others facing the challenges of Alport syndrome can provide valuable information that will help doctors better understand the disease and in turn, help patients with Alport syndrome now and in the future.

Connect with a study center

University of Minnesota
Minneapolis, Minnesota 55455
United States
Site Not Available
University of Minnesota
Minneapolis 5037649, Minnesota 5037779 55455
United States
Site Not Available

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