NKF launches patient network, first national registry for all stages of kidney disease
The National Kidney Foundation has launched a national registry for patients at all stages of kidney disease, which the organization hopes will bolster research initiatives aimed at improving individualized patient-centered care.
According to a press release, the registry – known as the NKF Patient Network – will not only aid in clinical research by collecting patient data but will also enable individuals with kidney disease to become better informed about their condition and connect with other patients. The organization stressed the uniqueness of the platform, noting that while most research initiatives primarily use either data from electronic health records or patient self-reporting, this model blends the two (ie, both clinical, laboratory metrics and measures related to patient perceptions and challenges).
“With patients sharing their perspectives and experience with kidney disease and the health care 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,” Lesley Inker, MD, MS, nephrologist at Tufts Medical Center and chair of the NKF Patient Network Steering Committee, said in the release. "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."
Kerry Willis, PhD, chief scientific officer of the National Kidney Foundation and co-developer of the network, elaborated on how the tool can help personalize care and empower patients.
“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,” she said. “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 release noted the launch of the patient network comes after 2 years of collaboration with volunteer advisory committees (which included nephrologists, patient advocates and researchers), as well as a partnership with Geisinger, the purpose of which is to encourage patients to sign up for the registry.
“We are excited to provide an opportunity for patients living with kidney disease to participate in the NKF Patient Network,” Alex Chang, MD, co-director of the Geisinger Kidney Health Research Institute, said. “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.”
For more information, or to join the network, visit: https://nkfpatientnetwork.healthie.net/info.