Groundbreaking interactive patient registry will help empower individuals with kidney disease to help pave the way for improved outcomes in kidney care
(March 20, 2024, New York, NY) — The National Kidney Foundation (NKF) proudly announces the launch of the KidneyCARE (Community Access to Research Equity)™ Study, a cutting-edge online research initiative combining patients’ insights on the impact of living with kidney disease and patient health data to improve and advance kidney disease research.
With more than one in 7 Americans affected by kidney disease and nearly one in 3 at risk of developing it, the need for innovative solutions and comprehensive support is critical. The KidneyCARE Study provides hope for those navigating the challenges of kidney disease, offering a transformative platform to enhance kidney care and advance research efforts. The 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 experience. This model is innovative in that most research initiatives follow one path or the other—EHR or patient self-reporting. The Study 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.
People with all types of kidney disease can join the KidneyCARE Study to share how kidney disease impacts their overall health and daily living. Participants in the Study will benefit by receiving kidney health education, access to clinical trial opportunities, and peer support information.
"This type of research is key to the future of patient-centered kidney care," said Kevin Longino, CEO of the National Kidney Foundation and a kidney transplant recipient. "In addition to collecting data on patient outcomes over time, the study aims to provide a lifeline of support and resources tailored to the unique needs of each participant, paving the way for improved outcomes."
NKF partnered with HHS Technology Group, (HTG) to utilize HTG’s proven data analytics platform, Discover Your Data (DyD®), as the foundation of the online patient registry, alongside the expertise of HTG’s subcontractor partners, Datavant, Inc. and Mathematica, Inc. DyD is an end-to-end platform solution that allows healthcare payers, nonprofit and public sector organizations, pharma, researchers, academic medical centers, and providers to translate big questions into deep understanding by seamlessly connecting to the nation’s largest health data ecosystem and allowing for organizations to bring their own data.
“We are proud to collaborate with NKF on this important initiative to improve kidney disease education, support, and treatment,” said Brett Furst, President, HTG. “Notably, the registry will include patient-reported outcomes, which are among the most difficult types of data to obtain but provide immense value as an indicator of the efficacy of various kidney disease treatments.”
“We invite individuals living with kidney disease to join us in this groundbreaking initiative," added Longino. "Together, we can drive meaningful change, transform kidney care, and ultimately work towards a future free from the burden of kidney disease."
For more information about the KidneyCARE Study and how to participate, visit kidneycarestudy.org.
About Kidney Disease
In the United States, 37 million adults are estimated to have kidney disease, also known as chronic kidney disease (CKD)—and approximately 90 percent don’t know they have it. About 1 in 3 adults in the U.S. are at risk for kidney disease. Risk factors for kidney disease include: diabetes, high blood pressure, heart disease, obesity,and family history. People of Black/African American, Hispanic/Latino, American Indian/Alaska Native, Asian American, or Native Hawaiian/Other Pacific Islander descent are at increased risk for developing the disease. Black/African American people are more than 3 times as likely as White people to have kidney failure. Hispanics/Latinos are 1.3 times more likely than non-Hispanics to have kidney failure.
About the National Kidney Foundation
The National Kidney Foundation is revolutionizing the fight to save lives by eliminating preventable kidney disease, accelerating innovation for the dignity of the patient experience, and dismantling structural inequities in kidney care, dialysis, and transplantation.