NKF Patient Network

NKF Patient Network

Alport Syndrome Community: Join the first nationwide registry for people at all stages and types of kidney disease.

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Do you have Alport syndrome?


Now open to adults and minors with a diagnosis of Alport syndrome.


Sign Up or Login to access the NKF Patient Network – Alport Syndrome supported by the Alport Syndrome Foundation.

Change the Face of Kidney Disease: Join the NKF Patient Network

Frequently Asked Questions

What is the NKF Patient Network?

The NKF Patient Network is the first nationwide kidney disease patient registry developed with the overall goal of improving the lives of people with kidney disease through research, clinical care, drug development, and supportive health policy decisions. We believe the best way to achieve this is by partnering with kidney patients like YOU—the Network is a place to transform kidney care and research together!

What is a patient registry?

A patient registry is an organized collection of information, or data, about people’s health. It can be used to study groups of people with a similar condition or disease to increase our understanding of that disease, and how it affects people.

I have heard of patient registries. How is the NKF Patient Network different?

The NKF Patient Network is not just a database, it is also a one-stop shop for kidney resources, focused on enhancing care through individualized education, tips, and support. The data we collect goes beyond numbers on a spreadsheet—we want to hear about your experiences living with kidney disease. The Network also allows you to connect with other patients and be a part of a supportive community that understands what it is like to live with kidney disease.

How does the NKF Patient Network work?

The NKF Patient Network offers a secure portal that you can log on to at any time to easily share your experiences and health data that, in turn, helps with research that supports the entire kidney disease community. You can choose to manually enter your information or link it, with permission, to your medical records.


By sharing your information and providing feedback through surveys about your condition and healthcare experiences, both doctors and scientists will be able to better understand your care and create research that focuses on what you need.

What should I expect once I log in?

When you log-in, modules will be featured on your dashboard to ask about your health, lifestyle and experiences with kidney disease and healthcare. You can return to the registry at any time to connect online with other patients, to access a wide variety of individualized kidney care resources, and to find new research opportunities and clinical trials for the development of treatments for kidney disease.
  • Patient profile
  • Patient-reported outcomes measures (PROMs) instruments
  • Other surveys


  • Online communities
  • Individualized education
  • Clinical trial finder
  • Health tips and support

How is my information kept private and secure?

Your information will be stored in an online platform by our technology partner, Pulse Infoframe, which is highly secure and meets all internationally established standards for security of personal and health information. Access to the database containing protected health information is limited to select and qualified registry personnel.

Will I be able to learn about clinical trials and research?

Yes! Clinical trials play a big part in finding new and improved treatments. Kidney disease researchers need participants to help drive the success of the trials. Through the NKF Patient Network, you will be able to find new research opportunities and volunteer your time and experiences.

Why should I join the NKF Patient Network?

There is power in numbers. By joining the Network, you’ll become part of a community of people affected by kidney disease who want to improve care and treatments, now and in the future. By sharing your health data and life experiences you will help expand knowledge of kidney disease for yourself, scientists, doctors, and researchers. This data will inspire and inform research that will improve what is known about kidney disease and how it affects people’s health and their lives. Improvements in treatment only happen when there’s access to enough patient health information—you can help by joining today!

The NKF Patient Network will allow people with kidney disease, like you, to:

Have access to a one-stop shop for kidney resources that enhance care with individualized education, tips, and support.

Be part of research and make a positive impact on treatment development by participating in studies.

Easily enter health data and connect to other similar patients.

Be part of a supportive community that understands what it’s like to live with kidney disease.

Media Room

Collaboration Announcement Video

Kerry Willis, NKF’s Chief Scientific Officer, talks about the NKF Patient Network – Alport Syndrome and the partnership with the Alport Syndrome Foundation (ASF).

Alport Syndrome Foundation Video

Maddie, Carol, Cassie, and December share their Alport journeys.

Alport Syndrome Foundation Video

Zac and his living donor, Michael, share their kidney transplant journey.

Alport Syndrome Foundation Video

Teens share their journeys with Alport syndrome.

Informational Video

Learn from Curtis the importance of the informed consent process and how we will keep your personal and health information private and secure.

Informational Video

Learn from Cari the five steps to participating in the NKF Patient Network.

Diversity in Clinical Research Video

The Network focuses on the diversity of the patient population with kidney disease and collects observations that can inform the development of patient-centered research, care, and treatments.

Diversity in Clinical Research Video

The Network can help amplify diverse patients’ voices when determining and defining the most pressing needs of people living with kidney disease.

Life as a Nephrologist Podcast

On this episode of Life as a Nephrologist, we are joined by Kerry Willis, Lesley Inker, Alexander Chang, Cari Maxwell and Curtis Warfield. Our guests begin the episode by explaining how the patient network journey started and the purpose of creating it.

What People are Saying

NKF Patient Advocate

Curtis Warfield

This Network will provide a lot of education that we need as patients as we advance through the difference stages of kidney disease, through dialysis, transplant, and even post-transplant.

NKF Patient Advocate

Mary Baliker

The Patient Network is a great resource for patients at all stages of chronic kidney disease. It's exciting to have the kidney community come together, both patients and healthcare professionals. As a patient I look forward to seeing how the network will help improve healthcare for kidney patients.

NKF Chief Scientific Officer

Kerry Willis, PhD

I could not be more pleased that data from patients at all stages of kidney disease will inspire and inform research to improve what is known about kidney disease and how it affects people’s health and their lives.

Nephrologist, Geisinger

Alexander Chang, MD, MS

The effort of the NKF establishing this Patient Network is huge. The opportunity to connect patients to get patient-reported data and offer the opportunities to participate in clinical trials is a step in the right direction.

Our Core Values

Inclusion, awareness, and health equity are core values that guide the NKF Patient Network.

Participation is open to all people with kidney disease.

Enrollment is open to all adults in the United States that are 18 years or older and have kidney disease, are on dialysis, or are a transplant recipient. People of every race, ethnicity, sex, gender, and sexual orientation are welcome. No health insurance is required. 

Participants reflect the diversity of kidney disease patients.

We need to know more about the differences that make each of us unique and the socio-economic challenges facing all people with kidney disease. Having a diverse group of participants can lead to precision medicine and health equity.

Participants are partners.

Participants contribute data and help raise awareness about kidney disease among family and friends. Though the Network, participants can learn more about their own health and kidney disease and its treatments, connect online with other patients, and receive support.

Data are accessible for research purposes.

Data are available to authorized researchers who want to learn more about kidney disease, including quality of life and social determinants of health. Any personal information that identifies a participant, such as name or address, is removed from data that researchers can access.


Foundational support for the NKF Patient Network was provided through a collaboration with Bayer AG. Principal sponsorship was provided by AstraZeneca. Additional support was provided by Boehringer-Ingelheim.

NKF Patient Network – Alport Syndrome is supported by:

Health System Partners: