March 2008 marked the first anniversary of the Alport Syndrome Treatments and Outcomes Registry - ASTOR. The University of Minnesota, Department of Pediatrics, created ASTOR (ClinicalTrials.gov NCT00481130) for the purpose of identifying and recruiting participants for natural history studies and therapeutic trials in children and adolescents with Alport syndrome.
Our first study “A Prospective Study of Microalbuminuria in Untreated Boys with Alport Syndrome” began recruiting in September 2007(ClinicalTrials.govNCT00622544). The goal of this study is to test the hypothesis that microalbuminuria precedes overt proteinuria in boys with Alport syndrome. We hope to establish that microalbuminuria is a reliable marker of disease progression in Alport syndrome, and a potential endpoint for therapeutic trials. As a result of our partnership with the University Of Utah School Of Medicine, we have enrolled 20 male subjects between the ages of 1 and 18 years, with a target enrollment of 30 - 40 subjects. Information pertaining to the study is available on the website. We are developing collaborative agreements with investigators at the Hospital for Sick Children in Toronto and Peking University First Hospital in Beijing to enhance participant enrollment in the Microalbuminuria study.
All study data is collected by ASTOR central office staff and maintained in a password protected web-based database. Physicians who have patients enrolled in the study will soon be able to access their patients' data using a unique password protected identifier.
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