NKF Patient Network
Frequently Asked Questions
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
NKF Patient Network – Alport Syndrome
Kerry Willis, NKF’s Chief Scientific Officer, talks about the NKF Patient Network – Alport Syndrome and the partnership with the Alport Syndrome Foundation (ASF).
Informational Video
Informed Consent and Data Security
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
How to Become Part of the NKF Patient Network
Learn from Cari the five steps to participating in the NKF Patient Network.
Diversity in Clinical Research Video
Why join the NKF Patient Network?
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
Why should diverse people join the NKF Patient Network?
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
Listen to a Podcast about the Patient Network
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.
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.
Press Releases
Sponsors
