The KidneyCARE Study

The KidneyCARE™ Study is a registry for patients at all stages of kidney disease developed to improve lives through research, clinical care, drug development, and supportive health policy decisions.

Healthcare professional looking at her computer screen
 

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).

When patients join the KidneyCARE Study, they can access:

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Comprehensive, up-to-date kidney health education

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Clinical trial and research opportunities

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Support programs focused on kidney health

What People are Saying

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 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."

Curtis Warfield, NKF Patient Advocate
NKF Patient Advocate

Curtis Warfield

"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."

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."

Questions?

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

Get to Know the KidneyCARE (Community Access to Research Equity)™ Study

What is the KidneyCARE™ Study?

The KidneyCARE Study is the first nationwide kidney disease patient registry that will advance both patient education and kidney disease treatment. This registry is a powerful research tool which 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 KidneyCARE Study plan to gather research data and why is it considered to be innovative?

The KidneyCARE Study 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 KidneyCARE Study will compile data on demographics, medical history, lifestyle, medications; in addition to extensive data on patient perceptions, challenges, and priorities. The KidneyCARE Study data will also be linked to other data sources, such as clinical trial study data that KidneyCARE Study participants participated in or data that is purchased commercially. The evidence-based data generated from this centralized platform will enable collaboration across NKF affiliates.

How will patients be invited to participate?

Healthcare professionals are critical to the Study’s success—help introduce your patients to the KidneyCARE Study and invite them to join by visiting us at www.kidneycarestudy.org.

 

NKF will also collaborate with health systems to obtain both electronic health care records (EHR) and patient-centered 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 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 KidneyCARE Study, it’s 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 KidneyCARE Study, 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 KidneyCARE Study?

The KidneyCARE Study offers a simple way for your patients to access a wide variety of individualized kidney care resources—all of which have been verified and vetted by the National Kidney Foundation. In addition, through the Study, patients will be able to provide real time feedback to the research community on their condition 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.

What sort of platform will the KidneyCARE Study use?

The NKF has partnered with HHS Technology Group, LLC (HTG), a software and solutions company founded on the principles of agility, innovation, and transparency. All data collected through the KidneyCARE Study will be stored on the HTG’s platform, Discover Your Data (DyD®), that is highly secure and meets all established standards for security of health information. The DyD® 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 KidneyCARE Study welcomes patients at all stages of kidney disease, including dialysis and transplant patients.

How can I get more information on the KidneyCARE Study?

To learn more, visit the kidneycarestudy.org. You can also contact the KidneyCARE Study team at 212.889.2210 x134, M-F 10:00am–4:00pm CT, or by email at kidneycarestudy@kidney.org. 

 

National Kidney Foundation
30 East 33rd Street, 
New York, NY 10016
www.kidney.org

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

Governance

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

Press Releases

National Kidney Foundation Partners with HHS Technology Group to Launch the KidneyCARE™ Study, Successor to the NKF Patient Network®

Study Recruitment

Please contact us at kidneycarestudy@kidney.org if you would like the NKF to help you recruit participants for a research study.

Sponsors

Foundational support for the KidneyCARE Study 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.

Study Sites in the U.S.:

Study Sites in Canada: