National Kidney Foundation Celebrates One-Year Anniversary of First National Registry Supporting Kidney Patients with All Stages and Types of Kidney Disease

NEW YORK, Feb. 22, 2022 /PRNewswire/ -- The National Kidney Foundation (NKF) celebrates the one-year anniversary of the NKF Patient Network, the first national registry for people with all stages and types of kidney diseases including people on dialysis and kidney transplant recipients. In honor of Black History Month, NKF encourages people who identify as Black or African American to consider the benefits of joining this powerful and secure platform that allows participants to be in community with others who have been diagnosed with kidney disease, also known as chronic kidney disease (CKD).

Kidney disease is a public health crisis that affects an estimated 37 million adults in the U.S. and can lead to life-threatening kidney failure. Approximately 90% of those with the disease don't even know they have it until it has progressed to the critical late stages. People of Black or African American, Hispanic or Latino, American Indian or Alaska Native, Asian American, or Native Hawaiian or Other Pacific Islander descent are all at increased risk for developing the disease. Black or African American people comprise 13% of the U.S. population but represent 35% of those with kidney failure, treated with dialysis, or kidney transplantation. Additionally, Black or African American people are more than 3 times as likely as White people to have kidney failure.

NKF urges Black or African American people to make their voices heard by joining the NKF Patient Network. By sharing their information and providing feedback through surveys about their condition and healthcare experiences, both doctors and scientists will be able to better understand care for all people living with kidney disease and create research that focuses on what they need. Benefits to participants include receiving an individualized education that is unique to their stage of the disease, information on how to join the latest clinical trials, and health tips based on the most recent studies. In addition, the platform offers a safe space for participants to share their experiences as kidney patients with those who understand what it's like to live with kidney disease. Therefore, it's essential that a diverse community of kidney patients share their lived experiences on the platform and understand the importance of their input.

Currently, participation on the platform continues to grow with kidney patients from 47 states and 57% between the age of 60-79 years old, 58% women, 46% at stage 3 CKD, 16% who are currently on dialysis, and 19% with a history of a kidney transplant.

"The NKF Patient Network is not just a database of people living with kidney disease, it's a large community that provides a one-stop-shop for kidney resources focused on enhancing care through education, tips, and support," said Kevin Longino, CEO of NKF and a kidney transplant recipient.  "The Network's infrastructure will enable individualized educational resources, research, clinical care, and health policy decisions to be centered on patient perceptions, priorities, and activities. We're committed to seeing the Network grow and expand to improve patient outcomes, experiences, and treatment for their disease."

NKF is continually researching new ways to expand the NKF Patient Network. The first U.S. clinical site is the Geisinger health system. If the Network's participants are receiving kidney care in the Geisinger system, their providers will share information from their electronic health records (EHR) with the Network upon receiving consent. NKF looks forward to partnering with more health systems and academic medical centers in 2022. In 2022, the platform will also launch in Spanish as well as expand to include Canadian sites.

Furthermore, NKF announced a partnership with the Alport Syndrome Foundation (ASF) on a registry expansion devoted to people with Alport syndrome within the NKF Patient Network. ASF Executive Director, Lisa Bonebrake, notes, "Alport syndrome is a rare, genetic kidney disease affecting individuals of all backgrounds and ethnicities. Our Foundation's membership is diverse and far-reaching. The NKF Patient Network-Alport Syndrome will soon give our community the opportunity to capture in-depth data about their experiences and become a catalyst for new research."

NKF encourages kidney patients with all stages and types of the disease to consider joining this powerful platform filled with resources and a community of people who understand the kidney disease journey. To learn more and register, visit NKFPatientNetwork.org or contact the NKF Cares Patient Help Line toll-free for help at 855.NKF.CARES (855.653.2273) or at [email protected].  

Foundational support for the NKF Patient Network was provided through a collaboration with Bayer AG. AstraZeneca and Novartis are platinum sponsors. Boehringer Ingelheim is the gold sponsor.

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.

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.

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SOURCE The National Kidney Foundation