Arbor Research Collaborative for Health and the NephCure Foundation have been approved for a funding award by the Patient-Centered Outcomes Research Institute to develop and expand a health data network that will be part of PCORnet: the National Patient-Centered Clinical Research Network. This new network, the NephCure Kidney Network, is one of 29 research networks that were approved for a total of $93.5 million from PCORI to form this new national resource that aims to boost the efficiency of health research.

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Experts from Arbor Research will collaborate with researchers from the NephCure Foundation (NephCure) and the University of Michigan, specializing in adult and pediatric clinical nephrology, clinical research in nephrotic syndrome, epidemiology, patient advocacy, and data management. This team will develop the NephCure Kidney Network as a patient-powered research network. This new network will enable important clinical and patient-reported data on nephrotic syndrome to be contributed, under patient control, to a centralized repository. The rich clinical and patient-reported outcomes database, with patients as active participants, will facilitate rapid development and execution of comparative effectiveness research to benefit patients with nephrotic syndrome, Arbor research said in a news release.  The diseases collectively referred to as nephrotic syndrome (Focal Segmental Glomerulosclerosis, Minimal Change Disease, and Membranous Nephropathy) are rare but serious kidney diseases that pose a substantial physical, psychological, and financial burden for those affected and often lead to kidney failure, requiring dialysis or other major medical complications.

PCORI said it envisions PCORnet as a secure, national data network that improves the speed, efficiency, and use of patient-centered comparative effectiveness research. By integrating data available in the 29 individual networks, PCORnet aims to provide access to a large amount of diverse, nationally representative health information that can support a range of study designs. It will reduce the time and effort needed to launch new studies and focus research on questions and outcomes especially useful to patients and those who care for them, according to PCORI.

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The establishment of a research network with readily available clinical and patient-reported data, an organizational structure that includes patients in the governance process, and direct partnership with patients who are seeking opportunities to be a part of the solution to better health will facilitate much-needed advances for patients with this rare and devastating condition. The success of this network will undoubtedly have broader applications to conditions with clinical overlap (such as obesity and chronic kidney disease) as well as to other rare diseases sharing similar barriers to research progress. 

PCORI is an independent, non-profit organization authorized by Congress in 2010 to fund research that will provide patients, their caregivers and clinicians with the evidence-based information needed to make better-informed health care decisions.