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New Registry for Alport Patients

Alport Syndrome Foundation (ASF) has partnered with the National Kidney Foundation (NKF) to create a new registry for Alport patients: NKF Patient Network – Alport Syndrome.

Over the last several years, NKF has been investing in and building a platform to create the United States’ first-ever interactive kidney disease patient registry. The overall registry is called the NKF Patient Network, which launched in 2021. This national patient registry is intended for all kinds of kidney patients at all stages of kidney disease. Our partnership has led to the development of the NKF Patient Network – Alport Syndrome, which is part of the overall NKF Patient Network. The NKF Patient Network – Alport Syndrome will capture data that’s specifically relevant to Alport syndrome, including currently understudied aspects of our disease and quality of life information.

The NKF Patient Network – Alport Syndrome offers a secure portal for U.S. patients of all ages (a parent can consent and serve as proxy for enrolling a child/children) to contribute their health information and experiences, join a community of other patients dealing with kidney disease, and find out about the latest clinical trials, treatments, education, and tips for good health. Patients can choose to manually enter information or link it, with your permission, to an electronic health record (EHR). Digital files, such as genetic testing results and audiograms, can also be directly uploaded to the platform. The NKF Patient Network – Alport Syndrome will provide a community platform for patients like you to manage your disease while also gathering comprehensive data for scientists working on cutting-edge treatments and maybe even a cure.

The NKF Patient Network – Alport Syndrome will become an important tool for scientists working on the next treatments to improve outcomes and save lives. The data collected goes beyond numbers on a spreadsheet – researchers want to hear patients’ experiences living with Alport syndrome. Your enrollment helps shape the future care of Alport patients!

Participation in the NKF Patient Network – Alport Syndrome is voluntary, free of charge, and currently open to all Alport patients in the United States (a parent can consent and serve as proxy for enrolling a child/children).

Note: The architecture of the registry platform also has the capacity to grow to become an international registry, which is the goal of both NKF and ASF. This is particularly important because Alport Syndrome Foundation has patient members from 70+ countries, has built relationships with Alport researchers globally, and several current clinical trials include clinical trial sites and Alport patients in countries outside the U.S.

Are you a U.S. patient interested in enrolling in the NKF Patient Network – Alport Syndrome? See below for educational resources and the link to enroll today!

Those who choose to enroll should promptly add [email protected] to their email contacts to avoid missing critical communications.

Technical questions can be directed by email: [email protected] or by phone: 1.855.NKF.CARES (1.855.653.2273).

Banner encouraging members of the Alport syndrome community to join the NKF Patient Network - Alport Syndrome.

Benefits of Enrollment

  • Be included in research projects around the world;
  • Have your voice heard by scientists and doctors studying the disease;
  • Receive individualized patient education based on different disease stages, symptoms, and treatments;
  • Find support from a community of people who understand what you’re going through;
  • Get notified on how to join the latest clinical trials; and
  • Receive health tips based on the most recent studies.
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