Patients to Lead National Research Priorities for Kidney Disease

Stakeholders’ Conference first of its kind

New York, NY—July 12, 2016—For the first time ever patients with chronic kidney disease will be at the forefront of deciding national research priorities, the National Kidney Foundation (NKF) announced today.  The National Kidney Foundation Patient Centered Outcomes Research Stakeholders’ Conference will bring together 100 patients, caregivers, stakeholders and academics to identify patient-centered research priorities—and challenges—for kidney disease. 

“Over the last five years research with patients and caregivers as active members of the research team has become increasingly important,” said Teri Browne, PhD, associate professor at University of South Carolina College of Social Work.  “But unfortunately, there’s been limited growth of such methodology in kidney disease research and very few studies that actively engage patients in the development and execution of kidney disease research,” added Dr. Browne, who will serve as project lead for the Stakeholders’ Conference. 

The Stakeholders’ Conference will be facilitated by both a patient and researcher and will feature patient, caregiver and researcher panel discussions and break-out group sessions.  Attendees will gain insight into the experiences of patients, caregivers and researchers; learn more about the importance of patient centered outcomes research (PCOR), and identify best practice strategies for actively engaging patients in kidney disease research. 

“The Stakeholders’ Conference will help address the gap in kidney disease research,” said Kathryn Pucci, vice president of education for the National Kidney Foundation (NKF).  “Our goal at NKF is to transform the process in which the healthcare community views patients from passive, to active and engaged partners in the healthcare decision making process, and centers them as key collaborators in research and in policies which directly impact them,” stressed Pucci. 

As part of NKF’s commitment to the Stakeholders’ Conference the foundation will provide a minimum of $40,000 towards funding a 2018 Kidney Disease Patient Centered Research Grant.  The grant will focus on the top kidney disease priorities identified by patients at the Conference.  The Stakeholders Conference is funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award.  The Conference will be held in conjunction with the National Kidney Foundation Spring Clinical Meetings in Orlando in April, 2017.  If you have questions, or are interested in participating in the Conference, please visit www.kidney.org/pcori.

Kidney Facts:

1 in 3 American adults is at risk for kidney disease.  26 million American adults have kidney disease -- and most don't know it.  Risk factors for kidney disease include diabetes, high blood pressure, family history, and age 60+.  People of African American, Hispanic, Asian, Native American or Pacific Islander descent are at increased risk for developing the disease.

The Patient-Centered Outcomes Research Institute (PCORI) is an independent, non-profit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continuously seeking input from a broad range of stakeholders to guide its work.  For more information visit www.pcori.org

The National Kidney Foundation (NKF) is the largest, most comprehensive and longstanding organization dedicated to the awareness, prevention and treatment of kidney disease.  For more information about NKF visit www.kidney.org