(Alport Syndrome Treatments and Outcomes Registry)
What is 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. This registry is the first of its kind in North America.
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!
What Does ASTOR Provide?
ASTOR provides an opportunity for people with Alport syndrome to participate in future research aimed at finding effective treatments for the disease. ASTOR also provides current information on Alport syndrome and its treatment to patients, families and physicians.
ASTOR staff will answer general inquiries from patients and family members regarding Alport syndrome. Patients and families will be directed back to their local treating physicians for all decision making. Treating physicians are in the best position to determine appropriate care for individual patients.
The Goals of ASTOR:
- To establish and sustain a registry of patients and families with Alport syndrome.
- To use a registry to facilitate the implementation of natural history studies and therapeutic trials.
- To provide patients, families and physicians with up-to-date information about Alport syndrome and its treatment.
Enrolling in ASTOR
We are asking physicians to refer patients and families with Alport syndrome to us (Physicians Contact Us Now).
Both patients and families are encouraged to complete the enrollment process (Enroll Now).
ASTOR began to enroll families in 2007. The Registry enrollment summary report provides information about the number of active participants, their gender and age ranges and graphs showing the wide ranging geographic distribution of participants who have enrolled. The information is presented in summary form only. Participant's identifiable health information is not presented in the summary report. Please visit the site to learn more.
Information and recommendations on this site are conscientiously presented. Consultation with the ASTOR central office is encouraged to clarify any topics.