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!
Alport syndrome patients are eligible to volunteer for this study if they are between the ages of 12-60 years, have a confirmed diagnosis of Alport syndrome, and meet the study eligibility requirements including estimated GFR between 30 and 90 mL/min/1.73 m2.
The study includes a screening period of up to 24 weeks and study visits for up to 104 weeks. Patients will receive the study drug (bardoxolone methyl or placebo) for 104 weeks. Patients that complete 104 weeks of treatment may be asked to participate in an open-label extension study where everyone receives bardoxolone methyl.
Visits will require coming to the study doctor’s clinic at the University of Minnesota or other eligible site and some visits will be conducted over the phone. Travel and lodging assistance is available.
If you are interested in learning more, please visit the following website to find a study clinic near you: http://cardinalclinicaltrial.com.
The HERA study is a clinical trial researching an investigational drug for people with Alport syndrome. The investigational drug is targeted at small genetic building blocks that are important in regulating genes’ activity. Researchers are studying whether the investigational drug could help preserve kidney function in patients with Alport syndrome.
If you decide to take part in the HERA study, you will need to visit the study center a number of times over 58–106 weeks (approximately 1–2 years). Travel and lodging assistance is available, as well as in-home visits, or visits at a location more convenient to you (such as work). For the first part of the study, you will receive the investigational drug or placebo as an injection every other week for 48 weeks (about 11 months). It will be randomly decided whether you receive the investigational drug or the placebo.
You might be able to take part in the HERA study if you:
•are 18–60 years of age (this may be lowered to 12 years of age in the future)
•have not received a kidney transplant
•are not undergoing dialysis.
For more information about the HERA study you can visit the website: www.alportstudy.com
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