Currently Enrolling
Interventional

EPPIK (IgAN, IgAV, Alport Syndrome)

The EPPIK Clinical Study for Children with IgAN, IgAV, and Alport Syndrome

Brief Description

The 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:

• 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.

Trial Physician / Study Coordinator

Shapiro Tal

Email Phone 310-423-5314
Site Name

Cedai-Sinai Medical Center
8700 Beverly Blvd, Los Angeles, CA 90048

Estimated enrollment

The entire EPPIK study (including FSGS, MCD, IgAN, IgAV and Alport Syndrome) will enroll approximately 57 children.

Estimated end date

To be determined

If there is not a site for a clinical trial nearby, you can ask the study team about the possibility of travel reimbursements (i.e., paying you back for your travel costs). Alternatively, you can ask about the possibility of participating from home.
Currently Enrolling
Interventional

EPPIK (IgAN, IgAV, Alport Syndrome)

The EPPIK Clinical Study for Children with IgAN, IgAV, and Alport Syndrome

Brief Description

The 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:

• 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.

Trial is for people with

For children ages 2-17 with:

• IgA nephropathy (IgAN), also known as Berger’s disease
• IgA vasculitis (IgAV), also known as Henoch-Schönlein purpura
• Alport syndrome (AS)

Study Goal

The goals of the study are to evaluate the safety and effectiveness of sparsentan on children with FSGS, MCD, IgAN, IgAV and Alport syndrome.

What is involved for the Patient?

Patients will participate for about 2 years and 3 months and will receive sparsentan.

About the drug or intervention

Participants receive sparsentan, the investigational drug, taken as a liquid by mouth.

Los Angeles, CA
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.

 

See other frequently asked questions
Did you know that some forms of kidney disease can be genetic?Researchers are continually discovering genetic causes of Nephrotic Syndrome.

Learn more about genetic causes of kidney disease and find out if you may be affected.