Frequently Asked Questions

Who can participate?

We are interested in enrolling patients and families who have received a diagnosis of Alport syndrome. Patients are eligible to register regardless of disease stage, prognosis, current treatment, treatment plans, physician specialty or medical care setting.

What's involved for patients?

ASTOR participants will be asked to permit the sharing of personal health information with our central office at the University of Minnesota, Minneapolis, MN. For certain future studies some participants may be asked to submit urine samples every four months. Parents will provide consent for children who are under age 18. Participants who are 13 years of age and older will sign an assent form. Participation will end when an ASTOR participant requires dialysis or kidney transplantation, or when patients or families decide to stop participating. However, urine samples provided by the participants may be used at some future date to study other options for diagnosing or treating Alport syndrome.

How can physicians help?

In order to carry out its mission to test treatments for Alport syndrome, ASTOR needs the support of 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 to study treatment options for Alport syndrome. With your help, we can identify effective treatments for all patients with Alport syndrome.

ASTOR currently relies on philanthropic support. In order to secure additional funds, ASTOR needs to demonstrate the ability to recruit a substantial cohort of patients and families.

On line Physician Registration

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.

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