May 21, 2019
2 min read

NKF creates new data network for patients

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Kerry Willis

The National Kidney Foundation is building an interactive community platform to allow dialysis and transplant patients to communicate with others about kidney disease. The project is set to launch next year.

“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,” Kerry Willis, PhD, chief scientific officer of the NKF, said. “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° 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 and diabetes), laboratory values for diagnostic tests and medications, the NKF said in a press release.

The network, funded by Bayer AG, will provide real-time, actionable data that will “allow for deeper and more robust research,” the NKF said. The platform will be run by PulseInfoFrame, a technology firm with a database which the NKF said is capable of safely and seamlessly connecting to a myriad of health information systems.

“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,” Lesley Inker, MD, chair of the NKF Patient Network Steering Committee, associate professor of medicine at Tufts University School of Medicine and director of the Kidney and Blood Pressure Center at Tufts Medical Center, said in the release. “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 steering committee is comprised of patients, researchers, academics, regulators, industry partners and other key stakeholders.

“Our hope is the network will provide physicians with new insights about the relationship between chronic kidney disease and comorbidities, such as heart disease and diabetes, in order to better inform early diagnosis and disease management strategies,” Michael Devoy, MD, chief medical officer at Bayer, said.

More information about the NKF Patient Network can be found at