Do you have a rare kidney disease like FSGS, IgA Nephropathy, or other Nephrotic Syndrome condition? You’ve come to the right place.
Access breakthrough clinical trials, expert care, and one-on-one patient support here.

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20 Active Trials in 682 Locations

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Trials
Currently Enrolling
Interventional

FeaturedThis clinical trial will determine the effectiveness of Sparsentan at reducing proteinuria in patients with primary FSGS.

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Trials
Currently Enrolling
Interventional

FeaturedThis study will be a randomized, active-control study that will help to determine if Sparsentan is effective at improving symptoms of IgAN.

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Trials
Currently Enrolling
Interventional

Study to Assess the Efficacy and Safety of Bleselumab in Preventing the Recurrence of Focal Segmental Glomerulosclerosis in de Novo Kidney Transplant Recipients

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Trials
Currently Enrolling
Observational

Cure Glomerulonephropathy (CureGN) is a multicenter five-year observational study of glomerular disease patients.

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Trials
Currently Enrolling
Observational

The Laboratory of Inherited Kidney Disease at Beth Israel Deaconess Medical Center and Harvard Medical School in Boston, Massachusetts, directed by Dr. Martin Pollak, seeks to identify genes that underlie the development of FSGS and similar diseases.

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Trials
Currently Enrolling
Interventional

The purpose of this study is to establish clinical proof-of-concept of effectiveness and to evaluate dose responses of the study drug in patients with IgAN.

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Trials
Currently Enrolling
Observational

The purpose of this study is to gather long-term observational data in order to help understand the biology behind nephrotic syndrome.

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Trials
Currently Enrolling
Interventional

This Phase 3 study will determine is OMS721 is safe and effective at reducing symptoms for patients with IgAN.

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Trials
Currently Enrolling
Interventional

This study will determine the effectiveness of a compound called ACH-0144471 at improving the clinical symptoms of C3G of IC-MPGN

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Trials
Currently Enrolling
Interventional

This study will evaluate the safety and efficacy, measured by reaching complete or partial remission, of voclosporin for FSGS patients.

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Trials
Currently Enrolling
Interventional

This is a Phase II trial assessing the safety and preliminary efficacy of daily APL-2 subcutaneous infusion administered for 16 weeks with a 6 month safety follow up, in patients with glomerulopathies

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Trials
Currently Enrolling
Interventional

FIRSTx is a Phase 2 study testing the safety and effectiveness of an investigational drug called CXA-10 designed to treat FSGS without steroids.

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Trials
Currently Enrolling
Interventional

Liposorber LA-15 System is a blood processing system used outside of the body. This device removes certain lipoproteins (LDL/BDL) from the patient's blood. The Liposorber LA-15 System is used in patients diagnosed with focal segmental glomerulosclerosis (FSGS.) either before transplant, or after a kidney transplant in which there is a recurrence of FSGS.

The study is ongoing at pediatric sites.

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Trials
Currently Enrolling
Interventional

A Multicenter, Randomized, Double-Blind, Placebo-Controlled Dose-Ranging Study to Evaluate the Safety and Efficacy of CCX140-B in Subjects with FSGS to be conducted in the North America, Europe and Australia

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Trials
Currently Enrolling
Interventional

This clinical trial will evaluate the efficacy of Nefecon compared to matching placebo in patients with primary IgAN on a background of optimized RAS inhibitor therapy.

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Trials
Enrollment Closed
Interventional

*Enrollment is now closed. We will keep you updated on the results of this study as they are published.
This multi-center, open-label Phase 2 trial will study the safety, tolerability, and efficacy of bardoxolone methyl in patients with rare forms of chronic kidney disease.

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Trials
Currently Enrolling
Interventional

The purpose of this Phase 2 adaptive study is to evaluate PF-06730512 following multiple intravenous infusions in adult patients with primary FSGS. In addition, the intention is to obtain an early indication of efficacy (how well the drug works at improving Urine Protein to Creatinine Ratio, which is a marker of kidney damage).

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Trials
Currently Enrolling
Interventional

This study will examine the effectiveness of Acthar® Gel in adults subjects with FSGS who have failed to achieve remission with, or who are intolerant of, 1 or more previous immunosuppressive therapies.

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Trials
Currently Enrolling
Observational

The Rare Genomes Project aims to increase rare and undiagnosed families’ access to genomic research, empowering patients to directly accelerate the pace of rare disease diagnosis. This project was designed to be a direct partnership between researchers and patients, so we can better understand their conditions.

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Trials
Currently Enrolling
Observational

The TANGO study aims to create a large international network of centers to study glomerular disease (GN) recurrence after renal transplantation.

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Frequently Asked Questions

Nephrotic Syndrome is not a disease itself, but rather a group of signs and symptoms that result from damage in the part of the kidney that filters blood (glomeruli).

Common symptoms include:

  • Foamy urine (called proteinuria) caused by protein “spilling” into the urine
  • Severe swelling in parts of the body, most noticeably around the eyes, hands, feet, and abdomen (called edema)
  • Weight gain due to a buildup of extra fluid
  • Fatigue
  • Loss of appetite
  • Low levels of protein in the blood (hypoalbuminemia)
  • Higher than normal fat and cholesterol levels in the blood (hyperlipidemia)

Nephrotic Syndrome can typically be diagnosed with a urine test.

Nephrotic Syndrome can be “primary” or “secondary” in nature.

Diseases that affect only the kidneys are called primary causes of Nephrotic Syndrome. Doctors often call these diseases “idiopathic,” which means that they arise from an unknown cause. Some of these diseases include:

  • Minimal Change Disease (MCD) – most common in children
  • Focal Segmental Glomerulosclerosis (FSGS)
  • Membranous Nephropathy (MN) – most common in adults
  • IgA Nephropathy (IgAN)

Secondary Nephrotic Syndrome is caused by an underlying, systemic condition like diabetes, lupus, HIV, and others.

The Kidney Health Gateway is a website owned and operated by NephCure Kidney International. The purpose of this website is to help patients with rare forms of primary Nephrotic Syndrome get connected to expert care and cutting-edge treatment options. By answering a few questions about you or your loved one’s condition, we can provide you with a list of clinical trials and/or expert doctors in your area.

If you have additional questions, please visit NephCure.org or email Info@NephCure.org.

 

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