What the Registry Needs
One of the main goals of ASTOR is to perform clinical trials of potential treatments for Alport syndrome. In order to achieve this goal, the participation of many patients, families and physicians will be necessary.
ASTOR personnel are committed to protecting the privacy rights of all patients and families who share their personal health information with us. ASTOR must follow stringent rules governing the collection, storage and use of personal health information that are in place at the University of Minnesota to safeguard this information. The University has an Institutional Review Board (IRB) that oversees all research activities to make sure that patients' privacy is protected. We never disclose a patient's or family's identity or location. Specific information about ASTOR participants will not be included in any publications or presentations.