NephCure Kidney Network
Patient Registry
Accelerating Research on Nephrotic Syndrome

Welcome to the NephCure Kidney Network, a registry of people with Focal Segmental Glomerulosclerosis (FSGS), Minimal Change Disease (MCD), Membranous Nephropathy (MN) and other rare diseases that cause primary Nephrotic Syndrome.

Stand Up and Be Counted: Your participation in the NephCure Kidney Network patient registry is a chance for YOU to help researchers find better treatments and the cure for the rare diseases that cause primary Nephrotic Syndrome. Researchers need to know more about who has these diseases and how their health and lives are affected. Each person or parent/guardian of a child with these diseases that registers can have a positive impact on thousands as we march together toward a cure.

Get Notified of New Clinical Trials: Select the option to be notified about new clinical trials when you register. NephCure will let you know about new studies being conducted in your area.

Registering is Easy and Free: Fill out as much information as you can. Update your information every time something changes. Your information is kept secure, and personal information is not shared without your permission. Building the NephCure Kidney Network is a CRITICAL STEP in improving the quality of your life or a loved one’s and thousands of others suffering from these conditions.

If you are a member of NephCure Kidney Network (NKN) Steering Committee, please click here to access NephCure Kidney Network Steering Committee Portal.

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Established in collaboration with the Office of Rare Diseases Research (ORDR), National Center National Center for Advancing Translational Sciences (NCATS), National Institutes of Health as part of the Global Rare Diseases Patient Registry and Data Repository (GRDR) pilot project, partially funded through a Patient-Centered Outcomes Research Institute (PCORI) Award (1306-04903) for development of the National Patient-Centered Clinical Research Network, known as PCORnet.

The NephCure Kidney Network is an initiative of NephCure Kidney International (NKI). NKI is a U.S. tax exempt 501(c)(3) public charity established in 1999 with the mission of supporting research to find the cause, better treatment, and a cure for FSGS and primary Nephrotic Syndrome diseases. (EIN: 38-3569922)

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