NKF Launches the First-Ever National Registry for All Stages of Kidney Disease
The new NKF Patient Network will help improve the lives of people with kidney disease through research, clinical care, drug development, and supportive health policy decisions
February 25, 2021, New York, NY —Today the National Kidney Foundation (NKF) launched the first-ever national registry for patients at all stages of kidney disease, the NKF Patient Network. This powerful research tool can improve the lives of people with kidney disease by better informing research, clinical care, drug development, and health policy decisions, as well as giving kidney patients the tools they need to stay educated and healthy.
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. It 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 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, PhD, Chief Scientific Officer of the National Kidney Foundation who has led the effort to develop the Network. “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.”
For the first time an 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, MD, MS, nephrologist at Tufts Medical Center and Chair of the NKF Patient Network Steering Committee. “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 EHR.
“At Pulse Infoframe, we put the patient first and leverage scientific knowledge to help better understand the types of data required to support an evidenced based approach,” said Femida Gwadry-Sridhar, PhD, RPh, CEO and Founder of Pulse. “By building collaborative networks of stakeholders from patient advocacy groups like NKF, pharmaceutical companies and clinicians, we provide a holistic view of each condition. This national launch is a great stop forward in considering the diversity of the population with kidney disease. We look forward to extending our experience and platform for the benefit of all stakeholders.”
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. Adhering to strict security and confidentiality standards, this robust compendium of patient data will be used to aid research efforts and provide patients with tailored educational resources.
“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. “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.
“Bayer is honored to be part this groundbreaking initiative that has the potential to galvanize the kidney community and help us better understand ways we can improve early diagnosis and disease management strategies,” said Michael Devoy, MD, Chief Medical Officer at Bayer. “Launch of the Network exemplifies what can be accomplished when we work together to address kidney disease, a significant underrecognized and underserved public health concern with serious implications for people with co-morbidities such as heart disease and type 2 diabetes.”
“I have dedicated my life’s work to kidney disease research and 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,” added Dr. Willis. “Improvements in treatment only happen when there’s access to enough patient health information and I hope all patients will consider joining today.”
To join the NKF Patient Network, go to NKFPatientNetwork.org. Patients can also contact the NKF Cares Patient Help Line toll-free for help at 855.NKF.CARES (855.653.2273) or at nkfcares@kidney.org. For additional information visit kidney.org/NKFpatientnetwork.
Kidney Disease Facts
In the United States, 37 million adults are estimated to have kidney disease, also called chronic kidney disease(CKD), and approximately 90 percent don’t know they have it. 1 in 3 adults in the U.S. is at risk for kidney disease. Risk factors for kidney disease include: diabetes, high blood pressure, heart disease, obesity, and family history. People who are Black or African American, Hispanic or Latino, American Indian or Alaska Native, Asian American, or Native Hawaiian or Other Pacific Islander are at increased risk for developing the disease. Black or African American people are almost 4 times more likely than Whites to have kidney failure. Hispanic or Latino people are 1.3 times more likely than non-Hispanics or Latinos to have kidney failure.
About National Kidney Foundation
The National Kidney Foundation (NKF) is the largest, most comprehensive, and longstanding patient-centric organization dedicated to the awareness, prevention, and treatment of kidney disease in the U.S. For more information about NKF, visit www.kidney.org.
About Geisinger
Geisinger is committed to making better health easier for the more than 1.5 million consumers it serves. Founded more than 100 years ago by Abigail Geisinger, the system now includes 13 hospital campuses, a 600,000-member health plan, two research centers and the Geisinger Commonwealth School of Medicine. With 32,000 employees and 1,800 employed physicians, Geisinger boosts its hometown economies in Pennsylvania and New Jersey by billions of dollars annually. Learn more at geisinger.org or connect with us on Facebook, Instagram, LinkedIn and Twitter.
About Pulse Infoframe, Inc.
Pulse Infoframe is an evidence generation company. Pulse provides a robust evidence platform that delivers real-world insights and precision knowledge through dynamic analytics and data visualization to accelerate time-to-value. Pulse Infoframe collects and aggregates data, including patient reported outcomes, from multiple sources making it available to researchers and relevant stakeholders and offers numerous benefits including dramatically improved collaboration, informing decision making and leading to advances in treatment. Pulse is headquartered in Canada, with offices in the United States. For more information, please contact Nina Liu at nliu@pulseinfoframe.com or visit www.pulseinfoframe.com.