ASTOR: Alport Syndrome Treatments and Outcomes Registry

Sponsor

University of Minnesota (Other)

Overall Status

Recruiting

CT.gov ID

NCT00481130

Collaborator

(none)

1,000

Enrollment

Location

268

Duration (Months)

3.7

Patients Per Site Per Month

Study Details

Study Description

Brief 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.

Condition or Disease	Intervention/Treatment	Phase
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.

Study Design

Study Type:

Observational [Patient Registry]

Anticipated Enrollment :

1000 participants

Observational Model:

Family-Based

Time Perspective:

Other

Official Title:

Alport Syndrome Treatments and Outcomes Registry

Study Start Date :

Sep 1, 2007

Anticipated Primary Completion Date :

Jan 1, 2030

Anticipated Study Completion Date :

Jan 1, 2030

Outcome Measures

Primary Outcome Measures

Data Collection: natural history study [Ongoing]

Eligibility Criteria

Criteria

Ages Eligible for Study:

0 Years to 99 Years

Sexes Eligible for Study:

All

Accepts Healthy Volunteers:

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.