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

The Patient-Centered Outcomes Research Institute (PCORI) has awarded funding to 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, University of Michigan, 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.

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