Clifford E. Kashtan, MD, ASTOR Executive Director. Dr. Kashtan is a Professor of Pediatrics at the University of Minnesota Medical School.Learn more...
Funding & Grants
Alport Syndrome Foundation Board of Directors, Clifford E. Kashtan, Martin Gregory, MD, University of Utah, Bradley Warady, MD, University of Missouri-Kansas City School of MedicineLearn more...
Brings together physicians and researchers knowledgeable in the study and treatment of Alport syndrome.Learn more...
Research & Study
Martin Gregory, MD and Jie Ding, MD, First University Hospital, Beijing ChinaLearn more...
Welcome to ASTOR
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.
We welcome your comments, suggestions and greatly appreciate your support!
University of Minnesota is participating in "A Natural History Study to Observe Disease Progression, Standard of Care and Investigate Biomarkers in Alport Syndrome Patients" also known as the Athena Study.
This study is funded by Regulus Therapeutics, San Diego, CA, and is being conducted by Dr. Michelle Rheault and Dr. Clifford Kashtan both at the University of Minnesota and other centers in the US and around the world.
The purpose of this study is to collect data to characterize or measure the progress of kidney disease in Alport syndrome patients over the course of 6 to 24 months. No treatment for Alport syndrome will be provided in this study and you may remain on any medications prescribed by your physician.
All study activities including genetic testing, travel, and hotel accommodations will be paid for by the study funders.
If you are interested in participating in this study or wish to have your child (age 16 and over) participate in this study you should contact Sarah Lemmage at 612-626-7632.
Familial Hematuria Video
"Familial Hematuria - A Never Ending Story", A Video By Dr. Clifford KashtanWatch video...
Web Enrollment Form
We encourage all patients and families who use the information on this site to contact us about enrolling in ASTOR.Enroll now
Contact our Research Coordinator for help locating resources, more information.
Alport Syndrome Treatments and Outcomes Registry
University of Minnesota: 612 626 7632
Toll Free: 800 688 5252 ext. 67632