NKF Connecting Patients, Care Partners, Investigators for Better Research
June, 16, 2021 — The National Kidney Foundation (NKF) unveiled a new portal to connect kidney patients, care partners, and living donors with researchers where they can partner on patient-centered outcomes research (PCOR).
NKF Kidney Research Connect was created to fill a gap in kidney research. NKF recognized that investigators weren’t sure how to identify patients while on the other hand many patients and care partners were looking to be more involved in kidney disease research but did not know where to start.
“Our main goal is to build the kidney community’s ability to engage as partners in patient-centered outcomes research and comparative effectiveness research (CER) by improving the knowledge of the patient-centered research process among investigators, patients, and other stakeholders and providing a platform to connect patients and researchers,” said NKF’s Chief Scientific Officer Kerry Willis, PhD. “We couldn’t be more optimistic that Kidney Research Connect will not only do that but also drive an increase in patient-centered outcomes research within the kidney community.”
Kidney patients and their care partners can now sign up to receive information about upcoming prospective patient-centered research projects by going to www.kidney.org/research-connect. Researchers can register and add their prospective investigations to the site and be connected with registered patients who meet their project criteria. As the number of users grow, the more effective it will become.
“It is important that we get the word out to all kidney patients, care partners, and investigators, that they now have access to this free platform to connect with each other on research projects, as well as access valuable resources about how to engage in patient-centered outcomes research,” said NKF Senior Vice President of Scientific Operations Jessica Joseph.
Recently, NKF held free virtual workshops for kidney patients, care partners, and investigators providing education on PCOR and how to become more involved, how best to use the portal, share their needs, and tell their personal story. Break-out sessions allowed patients and researchers to work together to conceptualize best PCOR practice.
NKF’s Kidney Research Connect portal is funded by an engagement award (15652-NKF), from the Patient-Centered Outcomes Research Institute (PCORI), which funds research that meaningfully involves patients and care partners throughout the research process.
For more information about NKF’s Kidney Research Connect, please go to www.kidney.org/research-connect.
Kidney Disease Facts
In the United States, 37 million adults are estimated to have chronic kidney disease (CKD)—and approximately 90 percent don’t know they have it. 1 in 3 adults in the U.S. is at risk for chronic kidney disease. Risk factors for kidney disease include: diabetes, high blood pressure, heart disease, obesity, and family history. People who are Black or African American, Hispanic or Latino, American Indian or Alaska Native, Asian American, or Native Hawaiian or Other Pacific Islander are at increased risk for developing the disease. Black or African American people are almost 4 times more likely than Whites to have kidney failure. Hispanic or Latino people are 1.3 times more likely than non-Hispanic or non-Latino people 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.