Pulse Infoframe to Develop With National Kidney Foundation First-Ever Patient Registry for Chronic Kidney Disease

National Kidney Foundation logoRecently, the National Kidney Foundation announced its intent to develop the first-ever patient registry for chronic kidney disease. Below, Pulse Infoframe CEO Dr. Femida Gwadry-Sridhar interviews the National Kidney Foundation’s Chief Scientific Officer, Dr. Kerry Willis.

Femida: The National Kidney Foundation (NKF) is building the first national chronic kidney disease (CKD) patient registry ever. What inspired you to take this decision, and what does NKF want to accomplish?

Kerry: CKD is a silent disease, which often does not manifest symptoms until soon before the development of kidney failure. In the United States, 37 million adults are estimated to have CKD, and most aren’t aware of it. One in three American adults are at risk for CKD. Risk factors include diabetes, high blood pressure, heart disease, obesity and family history. There is no doubt, CKD is a public health problem and a source of suffering and poor quality of life for those afflicted. Through the NKF Patient Network, our aim is to ameliorate this public health problem, relieve suffering and improve lives.

Even patients who might have been told they have the disease are usually not aware of the significance of it or what can be done to prevent development of kidney failure and avoid complications.

For the first time, through the NKF Patient Network, there will be a comprehensive collection of patient data which will enable better design of patient education resources, more targeted care, and more patient-centered clinical trials to discover new treatments for the disease. There is no other kidney disease registry in the world that combines patient-entered data with data from electronic health records. This pivotal combination will provide us with a 360-degree view of the patient we are working to help.

We have labeled this robust national registry the NKF Patient Network and are delighted to report that foundational support for the NKF Patient Network was provided through a collaboration with Bayer AG, which shares our goal of improving outcomes for people living with chronic kidney disease.

Femida: So, the NKF Patient Network is for public good in awareness and research. Is that right?

Kerry: Yes, NKF is the nation’s largest organization dedicated to preventing and treating kidney disease and is a lifeline for all people affected by kidney disease. As pioneers of scientific research and innovation, we focus on the whole patient through the lens of kidney health. We are relentless in our mission to enhance lives through action, education and accelerating change. The NKF Patient Network is a logical and needed resource in the fight to overcome CKD and bringing it forth is core to NKF, its mission and values.

Femida: For the benefit of our readers, can you summarize the overall goal of the NKF Patient Network?

Kerry: The overall goal of the NKF Patient Network is to create an interactive community of patients throughout the continuum of chronic kidney disease that links patient-entered data with objective data from electronic health records. This will enable individualized educational resources, research, clinical care and health policy decisions to be centered on patient perceptions, priorities and activities and ultimately improve patient outcomes and patients’ experience with their disease.

Femida: Can you provide an example of a specific project that could be undertaken to achieve NKF’s goal?

Kerry: Yes. We want to provide patient education and support, individualized to patients’ stage of disease and related health conditions. The way we will achieve this is to improve patients’ health literacy related to chronic kidney disease by using state-of-the-art technologies to individualize the content and delivery.

Femida: This is encouraging, given that health literacy is such an important factor to consider in evaluating access to care, adherence to treatments and overall health. Are there are other focus areas that you would like to share? 

Kerry: Yes. We want to create a robust database of patient perceptions, priorities and activities that will facilitate research, clinical care and policy decisions to improve patients’ experience and outcomes. The NKF Patient Network will improve understanding of epidemiology and costs of chronic kidney disease particularly as related to patient reported activities, such as impact of medication compliance, and nutritional and lifestyle modification on CKD progression.

Femida: Can you describe the success criteria that you have established for the NKF Patient Network?

Kerry: The success of the NKF Patient Network program will be gauged primarily in terms of level of patient participation and on-going “engagement” by all stakeholders. Regular use of the NKF Patient Network features by patients, caregivers, researchers, advocates, partners and public health officials is powerful evidence of success. A second level of success will be reflected in the volume of scientific papers published using NKF Patient Registry data.

Femida: This is terrific! Like the National Kidney Foundation, Pulse Infoframe is mission driven. As your partner and platform provider, we are deeply committed to the leadership path that you have laid out to advance CKD research, improve lives and relieve suffering. Your collaborative process designed to engage all stakeholders is one that we also utilize to build cohesive ecosystems with common goal focus.

Kerry: Success is rooted in an enduring commitment of service to others and, through the power of technology, breaking down barriers and enabling new avenues of collaboration. Pulse Infoframe’s real-world evidence platform, healthieTM, is an essential, powerful and easy-to-use resource enabling connectivity across NKF stakeholder communities and creating the opportunity to share knowledge and inform new therapies.

Femida: Are you looking for other patients, caregivers, researchers, advocates and policy makers to join you in your network?

Kerry: Yes, indeed. We are committed to developing the NKF Patient Network fully and making it into a powerful, easy-to-use, online platform of service to generations of stakeholders–patients, caregivers, researchers, advocates, partners and public health officials alike. Dr. Lesley Inker, MD, Associate Professor of Medicine at Tufts University School of Medicine and Director of the Kidney and Blood Pressure Center at Tufts Medical Center, chairs the NKF Patient Network Steering Committee. Very soon, we will engage in a feasibility study to test the NKF Patient Network linkage to the electronic health record system on a large scale, via a health system partnership. To all stakeholders who, like us, are committed to serving the CKD community to advance care and improve lives, we are interested in collaborations.

This story first appeared in our October 2019 newsletter. Get Pulse Infoframe news delivered to your inbox. Email us to sign up today.