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NKF Patient Network

NKF Patient Network

The first nationwide registry for people at all stages and types of kidney disease developed to improve lives through research, clinical care, drug development, and supportive health policy decisions.

 

Thank you for your interest in the NKF Patient Network. At this time, the NKF Patient Network is closed to new and existing participants as it transitions to a new platform.

Alport syndrome patients already enrolled in the Network will remain on the current platform and can continue their participation in the newly titled ASF Alport Patient Registry. That registry is also available to newly enrolling Alport syndrome patients. Contact info@alportsyndrome.org for further details.

Do you have questions or inquiries? Contact the NKF Patient Network team at: nkfpatientnetwork@kidney.org and a representative will get back to you promptly.

You can also decide to call our helpline NKF Cares at 1.855.NKF.CARES (1.855.653.2273).

Frequently Asked Questions for Healthcare Professionals

What is the NKF Patient Network?
The NKF Patient Network is the first nationwide kidney disease patient registry that will advance both patient education and kidney disease treatment. This powerful research tool can improve the lives of patients with kidney disease by better informing research, clinical care, drug development, and health policy decisions, as well as giving patients the tools they need to stay educated and healthy.

How does the NKF Patient Network plan to gather research data and why is it considered to be innovative?
The Network will collect both rigorous clinical and laboratory data from electronic health records (EHR), in addition to patient-entered data, which together allow for a “complete picture” of the patient. This model is considered innovative in that most research initiatives follow one path or the other—EHR or patient self-reporting. The NKF Patient Network will compile data on demographics, medical history, lifestyle, medications, blood and urine test results, in addition to extensive data on patient perceptions, challenges, and priorities.

How will patients be invited to participate?
Healthcare professionals are critical to the Network’s success—help introduce your patients to the NKF Patient Network and invite them to join by visiting us at NKFPatientNetwork.org.
 
NKF will also collaborate with health systems to obtain both electronic healthcare records (EHR) and patient-entered data. In parallel, patient enrollment will be achieved through a comprehensive outreach program that includes links from various other NKF programs, local NKF field office recruitment, links from clinical trials for kidney disease treatments, referrals from other Network participants and partners, and a direct public relations campaign.
 

Why should I ask my patients to participate?
When patients participate in research, they are often required to share their medical history, which can be extensive. With the NKF Patient Network, it is simple for them to enter their health data through a secure patient portal, allowing researchers to quickly access and use it to develop new kidney disease treatments. Through the NKF Patient Network, your patients will be able to contribute data that will aid in the success of clinical trials and ultimately patient outcomes.

What are other benefits of the NKF Patient Network?
The Network offers a simple way for your patients to access a wide variety of comprehensive, up-to-date individualized kidney care resources. In addition, through the Network, patients will be able to provide real-time feedback to the research community on their conditions and healthcare experiences. This information creates new opportunities for medicine and research that can target and help a wider range of patients, based on their perspectives, priorities, and activities.

Are there opportunities for patients to connect with NKF programs?
Members of the NKF Patient Network can learn about peer support resources and NKF programs. These programs provide ways to connect with others that understand what it’s like to live with chronic kidney disease, so they can feel less alone.

What sort of platform will the NKF Patient Network use?
NKF has partnered with a global health technology company, Pulse Infoframe, which has developed the healthie™ cloud-based platform, designed to extract, curate, analyze, and disseminate Real-World Evidence. All data collected through the NKF Patient Network will be stored on the healthie™ platform that is highly secure and meets all internationally established standards for security of health information. The healthie™ platform has the capability to connect to a myriad of health information systems safely and seamlessly.

What stage of kidney disease will be eligible to sign up?
The NKF Patient Network welcomes patients at all stages of kidney disease, as well as dialysis and transplant patients.

Questions?

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

What People are Saying

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.

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.

Research Insights

NKF Patient Network Poster

Download the NKF Patient Network Poster presented at the American Society of Nephrology (ASN) Kidney Week 2022.

Download the Poster

Annual Data Update

Download the NKF Patient Network Annual Data Update.

Download the Update

More Information

Governance

Learn about the NKF Patient Network governance structure that incorporates multi-stakeholders in the oversight and development of future directions needed to help the Network grow and achieve its objectives.
Learn More

Study Sites

 
Is your healthcare organization interested in becoming a study site?
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Sponsors

Foundational support for the NKF Patient Network was provided through a collaboration with Bayer AG. AstraZeneca and Novartis are platinum sponsors. Boehringer Ingelheim is gold sponsor.

Sponsors

Foundational support for the NKF Patient Network was provided through a collaboration with Bayer AG. AstraZeneca and Novartis are platinum sponsors. Boehringer Ingelheim is gold sponsor.

NKF Patient Network – Alport Syndrome is supported by:

Study Sites in the U.S.:

Study Sites in Canada:

30 East 33rd Street, New York, NY 10016

© 2023 National Kidney Foundation Inc.