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Currently Enrolling
Observational

NEPTUNE

Nephrotic Syndrome Study Network (NEPTUNE)

Brief Description

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

Email
Site Name

Johns Hopkins Medical Institute

Sponsor

The University of Michigan

Estimated enrollment

1200

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
Observational

NEPTUNE

Nephrotic Syndrome Study Network (NEPTUNE)

Brief Description

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

Trial is for people with

Primary focal segmental glomerulosclerosis (FSGS), membranous nephropathy (MN), or minimal change disease (MCD)

Study Goal

NEPTUNE seeks to increase the understanding and improve treatment of rare forms of Nephrotic Syndrome.

What is involved for the Patient?

Patients will be asked to allow researchers to access medical history. The study team may also collect biosamples (blood, urine, biopsy tissue). Visits may be in conjunction with normally scheduled appointments, but additional study visits may be required.

Baltimore, MD
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