Registry Information

The University of Minnesota's Department of Pediatrics has developed the Alport Syndrome Treatments and Outcomes Registry (ASTOR) in order to increase knowledge about Alport syndrome and identify effective treatments for the disease. This website provides patients, families and physicians the opportunity to enroll in ASTOR along with important educational information.

Over the past 30 years we have learned a great deal about Alport syndrome. However, there is no proven treatment for Alport syndrome other than kidney transplantation. Results of studies in animals have suggested several promising potential therapies. Potential drug treatments that might delay or prevent the development of kidney failure exist but need to be evaluated through clinical trials.

Conducting clinical trials of possible treatments for Alport syndrome presents many challenges. Because Alport syndrome is not a common disease, informative clinical trials will require the collaboration of investigators and patients at multiple centers.

ASTOR is a permanent organization sustained by private philanthropic donation. The central office is located at the University of Minnesota, Minneapolis, MN. Personnel working with ASTOR are listed on the Registry Personnel page of this website. ASTOR is an entirely non-profit whose primary interest is in clinical and scientific advancements. There are no charges for participation in ASTOR activities.

We are interested in collecting medical data on patients and families Alport syndrome. The main goal of ASTOR is to test potential treatments for Alport syndrome by performing clinical trials. ASTOR also aims to provide patients, families and physicians with the most up-to-date information about Alport syndrome.

Registry enrollment statistics can be viewed by visiting the following link:

Enrollment Summary

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