NKF to Develop First-Ever Patient Registry for Chronic Kidney Disease

New online platform will provide unique and powerful infrastructure for patient engagement, research studies and public health advocacy initiatives
New York, NY — May 21, 2019 – Today the National Kidney Foundation (NKF) announced a comprehensive plan to develop the first-ever national registry for patients at all stages of CKD called the NKF Patient Network.  The NKF Patient Network will create an interactive community of chronic kidney disease (CKD) patients that link patient-entered data on their health history, outcomes and preferences with clinical and laboratory data obtained from electronic health records.  This unique combination of data collected will enable individualized educational resources, research, clinical care and health policy decisions to be centered on the patient.
“For the first time we will have a comprehensive collection of patient data which will enable us to better design patient education resources, more targeted care and more patient-centered clinical trials to discover new treatments for the disease,” said Kerry Willis, PhD, Chief Scientific Officer, National Kidney Foundation. “There is no other kidney disease registry in the world that combines patient-entered data with data from electronic health records and this pivotal combination will provide us with a 360-degree view of the patient we are working to help.”
Data collected in the NKF Patient Network will include demographics, medical history, diet, lifestyle,  kidney disease stage and information about related comorbidities (such as heart disease, hypertension, diabetes), laboratory values for diagnostic tests, and medications. The specific goals of the NKF Patient Network are to provide patient education and support, individualized to patients’ stage of disease and related health conditions; provide a large, diverse pool of patients for clinical trial recruitment, input on patient-centered trial designs and opportunities for post-trial surveillance; and to create a robust database of patient outcomes, perceptions, priorities and activities that will facilitate research, clinical care and policy decisions to improve patients’ experience and outcomes.
“As we break virtual ground on the NKF Patient Network, there is much to be learned over the next year as we undertake what will be a distinctive resource to help advance the field of CKD research and patient care,” said Lesley Inker, MD, Chair of the NKF Patient Network Steering Committee and Associate Professor of Medicine at Tufts University School of Medicine and Director of the Kidney and Blood Pressure Center at Tufts Medical Center. “A diverse and highly innovative team will be focused on developing the NKF Patient Network and making it into a powerful, yet easy to use, online platform that will serve generations of patients and researchers.”
The NKF Patient Network Steering Committee is comprised of patients, researchers, academics, regulators, industry partners and other key stakeholders. The online platform will be developed over the next year by PulseInfoFrame, and the project will include the development and testing of the Registry’s patient portal as well as a feasibility study to test the linkage to electronic health record data from both single, self-enrolled, patients; and on a large scale via a health system partnership. 
“The NKF Patient Network is a powerful new resource poised to spur breakthrough collaboration and improve the quality of people’s lives,” said Dr.  Femida Gwadry-Sridhar, Pulse Infoframe Founder and CEO. “Pulse’s real-world evidence platform, healthieTM, enables connectivity across NKF stakeholder communities creating the opportunity to share knowledge and inform new therapy.”
The full-scale launch of the NKF Patient Network, which will include large-scale patient recruitment, is scheduled for February 2020.  A global launch of the NKF Patient Network is scheduled for 2021. Foundational support for the NKF Patient Network was provided through a collaboration with Bayer AG.
“Bayer and the National Kidney Foundation share the common goal of improving outcomes for people living with chronic kidney disease,” said Michael Devoy, MD, Chief Medical Officer at Bayer. “Our hope is the Network will provide physicians with new insights about the relationship between chronic kidney disease and co-morbidities such as heart disease and diabetes, in order to better inform early diagnosis and disease management strategies.”
More information about the NKF Patient Network can be found at www.kidney.org/nkf-patient-network.
NKF Professional Membership
Healthcare professionals can join NKF to receive access to tools and resources for both patients and professionals, discounts on professional education, and access to a network of thousands of individuals who treat patients with kidney disease. 
Kidney Disease Facts
In the United States 30 million adults are estimated to have chronic kidney disease—and most aren’t aware of it.  1 in 3 American adults are at risk for chronic kidney disease.  Risk factors for kidney disease include diabetes, high blood pressure, heart disease, obesity and family history.  People of African American, Hispanic, Native American, Asian or Pacific Islander descent are at increased risk for developing the disease.  African Americans are 3 times more likely than whites, and Hispanics are nearly 1.5 times more likely than non-Hispanics to develop end stage renal disease (kidney failure).
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.