NephCure Kidney Network Patient-Powered Research Network

The NephCure Kidney Network is a project of Arbor Research Collaborative for Health, in partnership with NephCure Kidney International, and is funded by the Patient-Centered Outcomes Research Institute (PCORI). This project develops and expands a health data network that is part of PCORnet: the National Patient-Centered Clinical Research Network.

Together, Arbor Research and NephCure Kidney International develop the NephCure Kidney Network as a Patient-Powered Research Network. NephCure is a growing community of patients, their families, clinicians, and researchers united by the quest for better care and treatments for those with primary Nephrotic Syndrome, a condition with no known cause, cure, or FDA-approved drugs. The integration of a rich database of patient-reported experiences, preferences, and outcomes with longitudinal clinical data from EHRs will provide the research community with an unprecedented resource for truly understanding the paths faced by patients suffering from these rare and devastating kidney diseases, as well as the opportunities NephCure should be exploring to make it a faster, safer journey.