Clinical Overview

What is Nephrotic Syndrome?

Nephrotic syndrome is a group of symptoms that show your kidneys are not working as well as they should. These symptoms include too much protein in your urine, not enough protein in your blood, too much fat or cholesterol in your blood, and swelling.

 

The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) has information about nephrotic syndrome in adults and nephrotic syndrome in children.

Patient Organizations
Current Research in this Space
(Observational Studies)

NEPTUNE

The Nephrotic Syndrome Study Network (NEPTUNE) is a 24-site consortium designed to foster clinical and translational research to redefine nephrotic syndrome on a mechanistic level and to translate new discoveries to the bedside. The NIH sponsored consortium is coordinated at the University of Michigan with a focus on patients with Focal Segmental Glomerulosclerosis (FSGS), Minimal Change Disease (MCD), Membranous Nephropathy (MN) or childhood onset nephrotic syndrome. 

NEPTUNE includes a) longitudinal cohort study with bio-specimens and data collection for use in scientific

NEPTUNE.jpg

discovery and b) a biology-based patient to clinical trial matching program, NEPTUNE MATCH.

Learn more at https://neptune-study.org

CUREGN

Glomerulonephropathy (CureGN) is a 66-center consortium that fosters research through a prospective observational study and biobank with 2,400 patients with glomerular disease.

Funded by the NIH-NIDDK, University of Michigan manages the CureGN data coordinating center. Participating children and adults with FSGS, MCD, MN, or IgA nephropathy graciously share their clinical data, patient-reported data, biospecimens and insight to support clinical and translational research.

 

Learn more at https://curegn.org

CUREGN.jpg

KRN

The mission of the KRN is to improve kidney disease treatment options and optimize patient health. KRN engages patients, medical teams, researchers, patient advocates, regulatory, and industry partners to accelerate research to find better treatments with a focus on rare kidney diseases.

The KRN, coordinated by the University of Michigan Pediatric Nephrology Research Program, includes a Patient Registry of 1,200 participants with proteinuric kidney disease who consent to share data from their electronic health records; Clinical Trials Consulting and Endpoints Consortium to improve clinical trial designs and trial endpoint options; and Quality

KRN.jpg

Improvement Program to improve the care provided to patients with kidney disease.

Learn more at https://www.kidneyresearchnetwork.org

The Nephrotic Syndrome Patient Reported Outcomes Consortium is a collaboration between academia, patient foundation partners, and industry to develop measures that collect information directly from patients about how they feel and function. These measures can be used in clinical and research settings.

Learn more at www.kidneyresearchnetwork.org/patient-reported-outcomes