Join the KidneyCARE (Community Access to Research Equity)™ Study, a research study for people with kidney disease.
What will I be asked to do?
KidneyCARE Study Relaunch FAQs
Why did the KidneyCARE Study (formally known as the NKF Patient Network) move to a new technology platform?
The KidneyCARE Study is hosted on an enhanced technology platform that will better serve people living with kidney disease and the entire kidney research community. Participants will continue to receive educational content, resources for peer support, and access to clinical trial opportunities.
What are the new features of the KidneyCARE Study?
The KidneyCARE Study will be available in English and in Spanish. Participants will have an enhanced user experience with easier access to educational materials, clinical trial information, and support programs. Participants will receive regular communication regarding healthy living tips and new research updates.
Why did the name change?
The new name, the KidneyCARE Study better explains the goals of this research study. The KidneyCARE (Community Access to Research Equity) Study is dedicated to advancing kidney disease research through the active involvement of the diverse kidney community. This Study is an opportunity for researchers to learn about kidney disease from people nationwide with all different types of kidney disease. People with kidney disease can access and receive the benefits of the KidneyCARE study online at any time of day regardless of where participants live.
Do I need to create a new account if I previously signed up for the NKF Patient Network?
Yes, you do need to create a new account and sign the new informed consent to participate in the KidneyCARE Study even if you signed up for the NKF Patient Network previously.
Can I receive a copy of my data from the NKF Patient Network?
Yes, you own your data. As a previous NKF Patient Network participant, you own your data and have the right to request a copy of your data. Please contact the KidneyCARE Study team at firstname.lastname@example.org for more information.
What is the KidneyCARE Study (formally known as the NKF Patient Network)?
The KidneyCARE (Community Access to Research Equity)™ Study is a nationwide research study for people with all stages and types of kidney disease. The goal of the KidneyCARE Study is 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.
Is the KidneyCARE Study a patient registry?
How is the KidneyCARE Study Different from Other Patient Registries?
Why should I join the KidneyCARE Study?
How does the KidneyCARE Study work?
What materials do I need before registering?
How is my information kept private and secure?
Will I be able to learn about clinical trials and research?
Does the KidneyCARE Study cost anything to join?
No, there is no cost to join the KidneyCARE Study. You do not need a physician’s referral and we do not contact your insurance to join.
”This KidneyCARE Study will provide a lot of education that we need as patients as we advance through the different stages of kidney disease, through dialysis, transplant, and even post-transplant.”
"The KidneyCARE Study 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 Study will help improve healthcare for kidney patients."
"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."
"The effort of the NKF establishing this KidneyCARE Study 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."
The KidneyCARE Study values a diverse, inclusive kidney community for kidney health.
Participation is open to all people with kidney disease.
Enrollment is open to all eligible adults who live in the United States and have kidney disease. People of every race, ethnicity, sex, gender, and sexual orientation are welcome. No health insurance is required. No physicians referral 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 Study, participants can learn more about their own health and kidney disease, support resources, and access to clinical trial opportunities.
Data are accessible for research purposes.
Data is 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. AstraZeneca and Novartis are platinum sponsors. Boehringer Ingelheim is gold sponsor.