Be a Part of Kidney Research

Join the KidneyCARE (Community Access to Research Equity)™ Study, a research study for people with kidney disease.

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The KidneyCARE Study

The KidneyCARE Study is a patient registry for people at all stages and with all types of kidney disease. As part of the KidneyCARE Study, you help research by answering survey questions about your experience with kidney disease.

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What will I be asked to do?

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Create an account, verify your email, and sign the consent form.

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Tell us about your experience

After the consent, complete surveys with questions focused on your experience with kidney disease.

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Enjoy the benefits

Receive up-to-date education, information about support programs, and access to clinical trial opportunities.

General FAQs

What is the KidneyCARE Study (formerly 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?

Yes, the KidneyCARE Study 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 KidneyCARE study is specifically 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.

How is the KidneyCARE Study Different from Other Patient Registries?

The KidneyCARE Study 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 KidneyCARE Study also offers you: 
  • Comprehensive, up-to-date education about kidney health
  • Information about peer support resources and NKF programs 
  • Access to participation in clinical trials and research studies

Why should I join the KidneyCARE Study?

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.

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 does the KidneyCARE Study work?

The KidneyCARE Study 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. The KidneyCARE Study will also link health information from other data sources to your account. All your survey answers and health information will be securely held within your KidneyCARE Study account. 

What materials do I need before registering?

Materials that will be beneficial to gather before registering include your recent lab results, medical records, and genetic test results related to your kidney disease (if any). If you do not have these materials, you can input information from these items periodically.

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, HHS Technology Group® (HTG). The KidneyCARE Study meets standards 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?

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 KidneyCARE Study, you also have opportunities to join new research studies. These trials and studies can improve treatments for everyone. 

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.

How can I learn more about the KidneyCARE Study?

Visit us at kidneycarestudy.org.


Need help? Contact the KidneyCARE Study team at 212.889.2210 x134 or at kidneycarestudy@kidney.org.

 

Questions?

If you have questions, please call the KidneyCARE Study team at 212.889.2210 ext.134 M-F 10am-4PM CT or email kidneycarestudy@kidney.org.

Media Room

Informational Video

Learn from Cari the five steps to participating in the KidneyCARE Study.

Play video
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.

Play video
Diversity in Clinical Research Video

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

Play video

What People are Saying

Curtis Warfield, NKF Patient Advocate
NKF Patient Advocate

Curtis Warfield

”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.”

NKF Patient Advocate, Mary Baliker
NKF Patient Advocate

Mary Baliker

"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."

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

Alexander Chang, MD, MS

Geisinger

"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."


Our Core Values

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.

Sponsors

Foundational support for the KidneyCARE Study is provided through a collaboration with Bayer AG.

AstraZeneca and Novartis are platinum sponsors.

Boehringer Ingelheim is a gold sponsor.

Apellis Pharmaceuticals is a silver sponsor.

Study Sites in the U.S.:

Study Sites in Canada: