August 21, 2020, New York, NY — The National Kidney Foundation (NKF) announced today a partnership with Geisinger on the upcoming NKF Patient Network, the first national registry for patients at all stages of chronic kidney disease.
The NKF Patient Network will be an interactive, online community of patients with kidney disease and the healthcare professionals who serve them with the overall goal of improving the lives of patients with kidney disease. The NKF Patient Network will facilitate research, informing clinical care, aiding in drug development and health policy decisions, powered by patient-entered data and clinical and laboratory data from health records.
Geisinger clinicians will encourage patients with kidney disease to enroll in the NKF Patient Network, operated on the Pulse Infoframe healthie™ platform. Patients who agree to participate will provide patient-reported data and linkage of electronic health record (EHR) data to the NKF Patient Network database. Adhering to strict security and confidentiality standards, this will be used to aid research efforts and provide patients with tailored educational resources.
“Our partnership with Geisinger adds a whole new dimension to the NKF Patient Network,” said Kerry Willis PhD, NKF Chief Scientific Officer. “We are excited about the opportunity to reach patients through their healthcare team, who can help them appreciate the benefits of participating in this unique project, for their own health and well-being, as well as for kidney disease research. In addition, Geisinger’s world-class researchers will lend their expertise in collecting and analyzing patient-reported outcomes data from Network participants.”
The NKF Patient Network will be a “living network” that will provide real-time, actionable data allowing for deeper and more robust research. It will compile data on demographics and medical history, diet, lifestyle, socioeconomic status, kidney disease and its complications, blood and urine test results, and medications. It will also collect data on patient perceptions, challenges and priorities.
Having a longitudinal database that includes all of these variables will provide new insights into kidney disease at all levels, for professionals in the field and the people with the disease.
“We are excited to provide an opportunity for patients living with kidney disease to participate in this project,” 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.
“This is about excellence in patient care and forward-thinking leadership,” said Femida Gwadry-Sridhar RPh. PhD, Pulse Infoframe founder and CEO. “Together, with NKF and Geisinger, we are harnessing technology to empower patients and enable collaborations that deliver new insights and improve lives. This is a great step forward in better understanding the impact of kidney disease on physical and mental health and supporting discovery in chronic kidney disease. Pulse Infoframe’s healthie™ platform was designed to do exactly this on a national and global scale.”
Partnerships such as the one now formed with Geisinger are imperative to fuel this major and unprecedented undertaking.
Foundational support for the NKF Patient Network was provided through a collaboration with Bayer AG and principal sponsorship was provided by AstraZeneca. The NKF Patient Network will be live in Fall 2020, find more information at kidney.org/nkf-patient-network.
Kidney Disease Facts
In the United States, 37 million adults are estimated to have chronic kidney disease—and approximately 90 percent don’t know they have 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, American Indian, Asian, or Pacific Islander descent are at increased risk for developing the disease. African Americans are almost 4 times more likely than White Americans to have kidney failure. Hispanics are 1.3 times more likely than non-Hispanics 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@pulseinforfame.com or visit www.pulseinfoframe.com.