National Kidney Foundation Launches National Registry
The National Kidney Foundation has created a national registry for patients at all stages of kidney disease. After almost two years of collaboration with volunteer advisory committees—comprised of nephrologists, patient advocates, and researchers in academia and the private sector—the NKF Patient Network is live today.
In the United States, 37 million adults are estimated to have kidney disease. Open to anyone living with kidney disease, including people on dialysis and kidney transplant recipients, who are at least 18 years old, the new registry will collect clinical and laboratory data from electronic health records in addition to patient-entered data, which together allow for a more complete picture of the patient experience. The organization noted that most research initiatives follow one path or the other—EHR or patient self-reporting. The NKF Patient Network 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.
"The NKF Patient Network is not just a database, it's a one-stop shop for kidney resources, focused on enhancing care through individualized education, tips, and support," said Kerry Willis, Ph.D., chief scientific officer of the NKF, in a statement. "The data collected goes beyond numbers on a spreadsheet—we want to hear about a patient's experience living with kidney disease. The Network also allows patients to connect with others and be a part of a supportive community that understands what it's like to live with kidney disease."
The ongoing collection of diverse patient data can be used to help better design patient education resources, more targeted care, and more patient-centered clinical trials to discover new treatments for the disease.
"With patients sharing their perspectives and experience with kidney disease and the healthcare system, both doctors and scientists will be able to better understand the needs of kidney patients' and create research that focuses on what matters most to patients," said Lesley Inker, M.D., M.S., nephrologist at Tufts Medical Center and chair of the NKF Patient Network Steering Committee, in a statement. "Clinical trials play a big part in finding new and improved treatments for kidney disease, and our hope with the NKF Patient Network is that patients will be able to find new research opportunities and participate in these clinical trials."
The NKF Patient Network offers a secure portal through technology partner Pulse Infoframe that patients can log onto at any time to easily share experiences and health data that, in turn, helps with research supporting the entire kidney disease community. Patients can choose to manually enter information or link it, with permission, from the EHR.
In August 2020, NKF announced a partnership with Geisinger, whose clinicians will encourage patients with kidney disease to enroll in the NKF Patient Network. Patients who agree to participate will provide patient-reported data and linkage of EHR data to the Network database.
"We are excited to provide an opportunity for patients living with kidney disease to participate in the NKF Patient Network," said Alex Chang, M.D., co-director of the Geisinger Kidney Health Research Institute, in a statement. "The ability to capture patient-reported data not normally collected in clinical practice or in research studies is very important. By linking this data with routinely collected EHR data, we believe this database could provide novel insights on how we can improve the lives of patients with kidney disease."
"This network could also provide opportunities for patients to receive access to education and resources, tailored to patients' stage of kidney disease," said Jamie Green, M.D., co-director of the Geisinger Kidney Health Research Institute.
Foundational support for the NKF Patient Network was provided through a collaboration with Bayer AG and principal sponsorship was provided by AstraZeneca. Additional support was provided by Boehringer-Ingelheim.
