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We are enrolling patients who have been diagnosed with Alport syndrome in a voluntary registry called the Alport Syndrome Treatments and Outcomes Registry (ASTOR). The registry will gather medical information on patients and their families and will collect periodic urine samples. The main purpose of the registry is to enable the implementation of natural history studies and clinical trials.
ASTOR relies on the generous support of philanthropic donation. In order to continue to grow, ASTOR needs physicians who are willing to recruit patients for the registry and to periodically collect data. If you are a doctor who sees patients with Alport syndrome we need your assistance. In return for your help, you will be able to collaborate with clinicians from around the country in studies of therapeutic options for Alport syndrome. With your help, we can identify successful treatment options for all patients with Alport syndrome.
All ASTOR activities involving patient recruitment, data collection and data storage, including HIPPA and Medical Information Release requirements (Forms), have been approved by the University of Minnesota's Institutional Review Board. Because participation is voluntary it is not necessary for you to obtain your institution's IRB approval.
Each patient's participation is voluntary and confidential. Patient names will not be shared with anyone outside the registry team.
We ask that you inform your patients about ASTOR and make our contact information available to them. We will also ask you to conduct a brief periodic record review after the patient has consented to participate. ASTOR staff will conduct the consent process and store the information you forward to us in a central database.
If you are a doctor, and you would like to refer patients to ASTOR, you can start the process right here.
Fill out the following form, and when you are finished, simply click submit. Your information will be securely sent to our offices, and we will contact you shortly.
To request more information call or write to:
Sarah Lemmage
Research Coordinator, ASTOR Studies
Division of Pediatric Nephrology
Department of Pediatrics
Phone: 612-626-7632

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