NCT00481130

Alport Syndrome Treatments and Outcomes Registry

• Status: Completed
• Phase: —
• Study type: Observational
• Enrollment: 655 (actual)
• Sponsor: University of Minnesota · Academic / Other
• Sex: All
• Age: 0 Years – 99 Years
• Healthy volunteers: Not accepted

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.

Detailed 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.

Conditions

• Alport Syndrome

Timeline

• Start date: 2007-09-01
• Primary completion: 2025-11-17
• Completion: 2025-11-17
• First posted: 2007-06-01
• Last updated: 2025-11-25

Locations

1 site across 1 country: United States