Alport Syndrome Community

Mom and son hugging and enjoying the day, with Patient Network logo
 

The Alport syndrome registry is now fully funded and administered by the Alport Syndrome Foundation. Visit https://alportsyndrome.org/ for more information or contact info@alportsyndrome.org.

The NKF Patient Network – Alport Syndrome

This Network is a patient registry for people with Alport syndrome. As part of the Network, you help research by answering survey questions about your experience with Alport syndrome.

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Frequently Asked Questions

What is the NKF Patient Network?

The NKF Patient Network is the first nationwide registry for people with all stages and types of kidney disease. This registry is a research study to improve understanding of kidney disease, and how it affects people in the real world. People can share health information and answer survey questions about their kidney disease and lifestyle. Researchers use the information provided by you and others like you to improve kidney care. By joining, you can be part of creating better treatments and help us work toward a cure for kidney disease.

What is a patient registry?

A patient registry is a collection of health information used for research. It includes groups of people with similar conditions. The NKF Patient Network is for people with kidney disease. This includes all causes and stages of kidney disease, people on dialysis, and those with a kidney transplant. The information you share will help researchers better understand kidney disease and how it affects your daily life. This data helps researchers create studies on improving kidney care.

Why should I join the NKF Patient Network?

We want you to be a part of a group of people who share a vision: a future with better treatments, earlier detection and, ultimately, a cure for kidney disease. Your participation will help answer questions about kidney disease and help improve treatments. Don’t miss your chance to change the future of kidney care.

 

Once you share your experiences with kidney disease, researchers will be able to view answers from you and others with kidney disease. This collective process gives researchers a better understanding of patient needs. There is power in numbers and you can help by joining today!

How is the NKF Patient Network different from other patient registries?

The NKF Patient Network is different because it focuses on your day-to-day life. We want to hear about your own experiences living with kidney disease and how it affects your daily life.

 

The NKF Patient Network also offers you:

  • Comprehensive, up-to-date education
  • Information about peer support resources and NKF programs
  • Access to participation in clinical trials and research studies

How does the NKF Patient Network work?

The NKF Patient Network is a secure online portal that you can log into from any internet device. You will be asked to share your experiences by answering survey questions about your health and day-to-day life. If you receive care from one of our partners, your health provider will automatically connect your electronic health record (EHR) to the NKF Patient Network—but only with your consent.

How is my information kept private and secure?

Your information is stored and protected in a highly secure online platform hosted by our technology partner, Pulse Infoframe. The NKF Patient Network meets standards worldwide for security of personal and health information. All data is de-identified to maintain your confidentiality, which means your personal information is not connected to your answers. Only authorized staff can access the information.

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

Yes! Clinical trials play a big part in finding new and better treatments. Kidney disease researchers need volunteers to help drive the success of the trials. Through the NKF Patient Network, you also have opportunities to join new research studies. These trials and studies can improve treatments for everyone.

How can I join the NKF Patient Network?

 
Need help? Contact NKF Cares Patient Help Line toll-free at 855.NKF.CARES (855.653.2273) or nkfpatientnetwork@kidney.org.

Questions?

If you have questions, please call NKF Cares at 855.653.2273 or email nkfpatientnetwork@kidney.org.

Media Room

Informational Video

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

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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.

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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.

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Alport Syndrome Foundation Video

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

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Alport Syndrome Foundation Video

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

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Alport Syndrome Foundation Video

Teens share their journeys with Alport syndrome.

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What People are Saying

Curtis Warfield, NKF Patient Advocate
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
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
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.

Alexander Chang, MD, MS, Nephrologist, Geisinger
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.

Sponsors

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:

Study Sites in the U.S.:

Study Sites in Canada: