Nov. 4, 2021, New York, NY — The National Kidney Foundation (NKF) will present today the new NKF Patient Network to nephrologists and other kidney care professionals during the virtual poster presentations at the American Society of Nephrology (ASN) 54th Annual Meeting & Scientific Exposition.
Lesley Inker, MD, Division of Nephrology, Tufts Medical Center, Boston, and NKF’s Senior Director Patient Outcomes Research, Silvia Ferrè PhD, will present the information about the NKF Patient Network.
“It is important to share our innovative Patient Network with as many nephrologists and research investigators as possible and this conference is an excellent opportunity to do so,” Dr. Inker said. “The Network is not just a database, it is also a place for patients to obtain individualized education, tips, and support. The data we collect goes beyond numbers on a spreadsheet—as it will incorporate patients’ experiences with kidney disease with clinical data. The Network also allows patients to connect with other patients and be a part of a supportive community that understands what it is like to live with kidney disease.”
NKF’s representatives will answer any questions that come up during the entire duration of the ASN Kidney Week through the forum feature available at the poster session. The Network welcomes people with all stages and types of kidney disease, including dialysis and kidney transplant recipients.
The NKF Patient Network compiles electronic medical records and data on demographics, medical history, lifestyle, medications, blood, and urine test results, in addition to extensive data on patient perceptions, challenges, and priorities. Healthcare professionals are encouraged to consider talking about the Network to their patients so they can enroll, access a wide variety of individualized kidney care resources, and contribute to research.
Investigators interested in using the data for research purposes will be able to submit proposals for review and approval, with the analyses performed by the Data Coordinating Center or NKF’s platform partner, Pulse Infoframe.
“Through the Network, patients will be able to provide real-time feedback to the research community on their conditions and healthcare experiences,” said NKF Chief Scientific Officer Kerry Willis, PhD. “This information creates new opportunities for research that can address a wider range of patient outcomes, based on their perspectives, priorities, and activities. Patients will be able to contribute data that will aid in the success of clinical trials and ultimately new and better treatments for kidney diseases.”
NKF has spent the last three years developing the Network and working with partner Pulse Infoframe, clinical partner Geisinger and foundational sponsor Bayer, and launched it in the U.S. in February 2021.
The Network is expanding to other health systems in the U.S. and internationally and the NKF Patient Network - Alport Syndrome will launch by the end of 2021. In 2022, the Network will be available in Spanish.
About Kidney Disease
In the United States, 37 million adults are estimated to have kidney disease, also known as chronic kidney disease (CKD)—and approximately 90 percent don’t know they have it. 1 in 3 adults in the U.S. are at risk for kidney disease. Risk factors for kidney disease include: diabetes, high blood pressure, heart disease, obesity, and family history. People of Black/African American, Hispanic/Latino, American Indian/Alaska Native, Asian American, or Native Hawaiian/Other Pacific Islander descent are at increased risk for developing the disease. Black/African American people are more than 3 times as likely as White people to have kidney failure. Hispanics/Latinos are 1.3 times more likely than non-Hispanics to have kidney failure.
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.
About the 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.