A new network

National Kidney Foundation introduces its plan for an expansive kidney disease registry

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NEW YORK—In the case of diseases without immediately obvious symptoms, patients may not even know of their disease state. Kidney disease is one such “silent disease,” and the National Kidney Foundation (NKF) has laid out its plan for establishing a national registry for patients to combat the issue: the NKF Patient Network, an interactive platform that links patient-provided data on health history and preferences with clinical and laboratory data. According to the NKF, this approach “will enable individualized educational resources, research, clinical care and health policy decisions to be centered on the patient.”
“Contrasting with, say, migraine sufferers or people with asthma—patients know they have diseases, they want a way to learn about their condition and to talk to other people and potentially participate in clinical trials—but with kidney disease, they often don't know it. So we have to really develop a forum that they want to engage in so they can learn about their disease and participate in research too. We think it's going to help people become more educated about kidney disease,” says Dr. Lesley Inker, 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.
“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,” noted Dr. Kerry Willis, chief scientific officer for the 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.”
The NKF Patient Network will collect and concentrate a variety of data, including medical history, demographics, diet, lifestyle, disease stage and related comorbidities, as well as laboratory values for diagnostic tests and medications. Ultimately, the goals are to offer patient education and support; centralize a diverse group of patients for clinical trial recruitment and trial design input; and establish a database of patient information and outcomes to support research, treatment and policy decisions.
“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 [chronic kidney disease] research and patient care,” commented Inker. “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 network will be developed over the course of the next year by PulseInfoFrame, work that will include testing the registry's patient portal and a feasibility study to test the links to electronic health record data from individual patients and a large-scale health system partnership.
The full-scale launch of the platform, including large-scale patient recruitment, is expected in February 2020, with a global launch set for 2021. Foundational support for this program comes from a collaboration with Bayer AG.
Patient recruitment for clinical trials is currently the leading reason for trials not being completed on schedule, and that is no less true in the field of kidney disease. According to Inker, the hope for this project is that it will not only educate patients, but also educate trial sponsors as to new options for trial design and boosting recruitment.
“If patients are aware of what the meaning of kidney disease is, then we can try and engage them in the interest of participating in clinical trials. That will help recruitment, and that will allow the whole drug development process to go much easier than it currently is,” Inker tells DDNews. “The community in general knows that recruitment is always a challenge, and we are hoping that having a pool of really engaged, interested participants, patients who are interested in participating in trials or in research in many other ways, may help facilitate the performance of clinical trials. We talk about having patients engaged to help design trials, what does it mean to be a research participant, and having engaged patients who can even help us design trials that are better for patients is part of what our aims are.”
Approximately 30 million adults in the United States are estimated to have chronic kidney disease, with one in three adults at risk for the disease, and most are unaware of their disease state. Risk factors include diabetes, high blood pressure, obesity, heart disease and a family history of kidney disease.

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