Enroll Now

Meaningful studies of treatments for Alport syndrome will require the participation of many patients, families and physicians. We encourage all families, patients and physicians who use the information on this site to contact us about enrolling in ASTOR.

Patients and families may initiate the enrollment process. Physicians may contact us about referring patients to the ASTOR central office.

Review Board / Human Subjects Committee Approvals

The Alport Syndrome Treatments and Outcomes registry is approved on a continuing basis by the Institutional Review Board (IRB) of the University of Minnesota, Minneapolis, Minnesota.

Most institutions will allow patients and families to enroll directly with ASTOR. Direct patient or family enrollment will often eliminate the need for each institution's IRB to review registry protocols. (For a rare disease, it is often impractical to obtain individual IRB processing). When necessary, ASTOR will work with local IRBs to satisfy their requirements.

Patient and Family Enrollment

Patients over the age of 18 who are interested in enrolling in ASTOR can contact the central office (Enroll Now).

Families who want to enroll their children in ASTOR should review the For Patients and Families page on this website in order to understand the purposes of ASTOR and to learn how ASTOR will protect their children's privacy. The family should contact the ASTOR central office to complete the consent process and give authorization for their children's physicians to share medical information with ASTOR.

Important facts about enrollment

• Anyone over the age of 18 can consent to participate on his or her own behalf
• Participants and families will be told that the purpose of the study is to collect personal health information and in some cases conduct urine tests that will help us understand the natural history of Alport syndrome
• Participants will be told that future clinical studies are planned for consenting registry participants and that these studies will require separate consent processes