Kidney Center included in PCORI Pilot Project

The UNC Kidney Center has been included in PCORI Pilot Project to study and develop a Patient Centered Decision Tool for Nephrotic Syndrome Management. Patrick Nachman, MD, will lead UNC's effort. The project is part of a national effort to improve methods for Patient-Centered Outcomes Research.

The Patient-Centered Outcomes Research Institute (PCORI) has awarded funding to the UNC to study and develop a patient centered decision support tool for management of nephrotic syndrome. The award is part of PCORI’s Pilot Projects Program, which will address a broad range of questions about methods for engaging patients in various aspects of the conduct and dissemination of health research.

Patrick Nachman, MD, will lead UNC's effort in the two-year research project. Other partners include the Nephcure Foundation, Sunnybrook Research Institute, and Ryerson University. The project will focus on strengthening our understanding of the patient and physician perspective of nephrotic syndrome, therapy, prognosis, and factors influencing disease management and to use the information generated to inform the creation of a shared-learning online decision support tool.  This tool will address a mutual understanding by the patient and the healthcare team of disease condition, treatment options and strategies for health-management. The funding for UNC has been approved pending completion of a business review and a formal award agreement with PCORI.

PCORI is an independent, non-profit organization whose establishment was 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 health care decisions.

“The Pilot Projects will improve our understanding of how to conduct research and disseminate research findings in ways that are more responsive to the needs of patients and the health care community,” said PCORI Executive Director Joe Selby, MD, MPH. “We are excited to be funding 50 projects nationwide, led by creative and innovative researchers. Their work will help us establish a foundation for patient-centered outcomes research that will give patients, caregivers and clinicians the tools they need every day.”

PCORI is committing $30 million in funding over two years for the pilot projects, which were selected by PCORI ‘s Board of Governors through a competitive, multi-stage review process. Proposals were evaluated for their scientific merit and rigor and fit within eight areas of interest outlined in the pilot projects announcement.

Awards, approved for research institutions in 24 states and the District of Columbia, include those for projects designed to develop a range of tools and techniques aimed at improving patient-centered care and decision-making; create new patient-centered care measures; and improve delivery of patient-centered counseling and care in various health care settings.

For more information about the PCORI Pilot Projects, visit

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