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NCT00481130 Clinical Trial

Alport Syndrome Treatments and Outcomes Registry

Alport Syndrome Clinical Trial

— ASTOR  

Official title:
Alport Syndrome Treatments and Outcomes Registry

Clinical Trial Details — Status: Recruiting

Administrative data
NCT number NCT00481130
Other study ID # 0704M05941
Secondary ID
Status Recruiting
Phase
First received
Last updated
Start date September 2007
Est. completion date January 2030

Study information
Verified date April 2024
Source University of Minnesota
Contact Sarah Lemmage
Phone 612-626-7632
Email lemmage@umn.edu
Is FDA regulated No
Health authority
Study type Observational [Patient Registry]

Clinical Trial 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.

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.

Recruitment information / eligibility
Status Recruiting
Enrollment 1000
Est. completion date January 2030
Est. primary completion date January 2030
Accepts healthy volunteers No
Gender All
Age group 0 Years to 99 Years
Eligibility 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 Criteria: Uncertain diagnosis of Alport syndrome.

Study Design

Related Conditions & MeSH terms

Locations
Country Name City State
United States University of Minnesota Minneapolis Minnesota

Sponsors (1)
Lead Sponsor Collaborator
University of Minnesota

Country where clinical trial is conducted

United States, 

Outcome
Type Measure Description Time frame Safety issue
Primary Data Collection: natural history study Ongoing
See also
  Status Clinical Trial Phase
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Not yet recruiting NCT05133050 - Safety and Efficacy of ACEI in Alport Syndrome Patients With COL4A3/COL4A4/COL4A5 Variants N/A
Recruiting NCT04947813 - Genotype-Phenotype Correlations in Patients With Alport Syndrome