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Currently Enrolling
Interventional

FeaturedThe EPPIK study will evaluate the investigational drug, sparsentan, for the treatment of selected rare kidney diseases. The investigational approach is to lower proteinuria levels with sparsentan and slow the loss of kidney function in children ages 2-17 with enrollment currently open to patients aged 2 to 7 years. Indications include: • IgA nephropathy (IgAN), also known as Berger’s disease • IgA vasculitis (IgAV), also known as Henoch-Schönlein purpura • Alport syndrome (AS).
See also the EPPIK Clinical Study for Children with FSGS and MCD.

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Currently Enrolling
Interventional

FeaturedThe EPPIK study will evaluate the investigational drug, sparsentan, for the treatment of selected rare kidney diseases. The investigational approach is to lower proteinuria levels with sparsentan and slow the loss of kidney function in children ages 1-17 with enrollment currently open to patients 2 to 7 years. Indications include: • Focal segmental glomerulosclerosis (FSGS) • Minimal change disease (MCD) See also the EPPIK Clinical Study for Children with IgAN, IgAV, and Alport Syndrome.

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Currently Enrolling
Interventional

The purpose of this clinical trial is to evaluate the safety and efficacy (effectiveness against disease) of the study medication (ALXN2050) in participants with lupus nephritis (LN) or immunoglobulin A nephropathy (IgAN), a rare chronic kidney disease.

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Currently Enrolling
Interventional

The purpose of this clinical trial is to evaluate the safety and efficacy (effectiveness against disease) of the study medication (ALXN1210 also known as ravulizumab or ULTOMIRIS ®) in participants with lupus nephritis (LN) or immunoglobulin A nephropathy (IgAN), a rare chronic kidney disease.

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Currently Enrolling
Interventional

The study is evaluating the safety and effectiveness of an investigational, targeted C3 inhibitor called pegcetacoplan in adults who have C3G or IC-MPGN recurrence after kidney transplant

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Currently Enrolling
Interventional

This study is being done to see if the study drug, called BI 764198, may help people with FSGS. The study drug or a placebo will be taken as a capsule by mouth one (1) time every day for about 12 weeks.

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Currently Enrolling
Interventional

JUSTICE is a single-center, double-blinded, randomized trial of baricitinib therapy for APOL1-associated FSGS or Hypertension Associated-CKD.

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Currently Enrolling
Interventional

A study to learn if atrasentan is safe and works in people with IgA nephropathy who are taking an SGLT2 inhibitor.

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Currently Enrolling
Interventional

The purpose of this study is to evaluate the safety and efficacy of BION-1301 in adults with IgA nephropathy.

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Currently Enrolling
Observational

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

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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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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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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.

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Enrollment Closed
Interventional

The IGNAZ Study is looking at the safety and effectiveness of Felzartamab in adults 18 to 80 years old with IgA nephropathy. Researchers want to compare different doses of Felzartamab to see which one might be better than taking no medicine at all.

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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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Enrollment Closed
Interventional

The study is designed as a multicenter, randomized, double-blind, parallel group, placebo-controlled study to evaluate the efficacy and safety of iptacopan (LNP023) in complement 3 glomerulopathy.

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Currently Enrolling
Interventional

This phase 3 trial will assess the efficacy and safety of sibeprenlimab administered SC once every 4 weeks as an add-on to standard of care (SOC) treatment (eg, angiotensin-converting enzyme inhibitors [ACEIs] and/or angiotensin receptor blockers [ARBs]). Furthermore, subjects who are on a stable dose of sodium-glucose cotransporter-2 inhibitors (SGLT2i) therapy for IgAN, in addition to ACEIs and/or ARBs, may participate in the trial if treatment was initiated at least 3 months prior to
screening.

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Currently Enrolling
Observational

Researchers from the University of Michigan and Northwestern University are studying people's experiences with swelling caused by Nephrotic Syndrome. Interviews with patients (child and adult) and parents of young children will be conducted. The information collected from the interviews will be used to develop a survey to use when testing new medications for Nephrotic Syndrome.
Please consider participating in a 1-hour long interview with the Prepare-NS research study to discuss children and adults experiences with swelling.

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Currently Enrolling
Interventional

A Phase II, Multi-center, Open-Label Study to Assess the Safety, Tolerability, Efficacy, and Pharmacokinetics of R3R01 in Alport Syndrome Patients with uncontrolled Proteinuria on ACE/ARB Inhibition, and in Patients with Primary Steroid-Resistant Focal Segmental Glomerulosclerosis.

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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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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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Currently Enrolling
Interventional

The purpose of this study is to evaluate the efficacy, safety, tolerability and pharmacokinetics (PK) of VX-147 in participants aged 12 years and older with apolipoprotein L1 (APOL1)-mediated proteinuric kidney disease.

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Currently Enrolling
Observational

A Study of the Prevalence of Apolipoprotein L1 (APOL1) Alleles Among Individuals With Proteinuric Kidney Disease Who Are of Recent African Ancestry or Geographic Origin.

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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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