Patient resources

Looking for ways to
get involved?
Take me there
Looking for other
Nephrotic Syndrome REsearch?
Take me there

What is nephrotic syndrome?

Nephrotic syndrome (NS) is not a disease, but an umbrella term for the collection of signs and symptoms that occurs when there is a problem with the kidney’s filtering system (glomeruli) causes bloodstream proteins to leak into the urine (proteinuria).

Nephrotic syndrome has many causes. The most common are: Focal segmental glomerulosclerosis (FSGS), Minimal change disease (MCD), and Membranous nephropathy (MN)

Common Symptoms

  • Swelling in parts of the body (edema) most visible in the head, hands, feet and belly
  • Low level of protein in the blood (hypoalbuminemia)
  • High blood cholesterol (hypercholesterolemia)
  • High blood pressure (hypertension)

What causes IT?

The specific cause of nephrotic syndrome can only be made with a kidney biopsy. Children, specifically, may be treated with steroids instead of having a biopsy, if there are no other complications.

Who gets it?

Anyone can get nephrotic syndrome.

Nephrotic syndrome is one of the most common causes of chronic kidney disease and is responsible for about 12% of kidney failure in adults and 20% in children.

Focal Segmental Glomerulosclerosis (FSGS)?

Focal Segmental Glomerulosclerosis (FSGS) is a disease that affects the kidney’s filtering system (glomeruli) causing scarring and loss of large amounts of protein in the urine.

Who gets It?

Children and adults of all ages and races can get FSGS

Common Symptoms:

FSGS causes loss of protein in the urine which may lead to:

  • Swelling in parts of the body (edema) most visible in the head, hands, feet and belly
  • Low level of protein in the blood (hypoalbuminemia)
  • High blood cholesterol (hypercholesterolemia)
  • High blood pressure (hypertension)
  • Kidney failure

What causes IT?

There is no single cause of FSGS. When the cause is not known it is called idiopathic or primary FSGS. In some patients FSGS may be the result of a genetic or inherited disease, an infection, or another kidney disease that leads to scarring.

What is the treatment?

Very few treatments are available for patients with FSGS. Most often, patients are treated with drugs called steroids (prednisone or prednisolone) and with blood pressure medicines. Some patients respond well to other medicines that suppress the immune system. To date, there is no treatment that works for every person with FSGS. Patients who do not respond to treatments are at risk for kidney failure. The NEPTUNE study aims to find out more about the disease for better treatments.

How is IT Diagnosed?

With information obtained from blood tests, urine tests, and a kidney biopsy, a physician can determine if a person has FSGS.

Minimal Change Disease (MCD)

Minimal change disease can occur at any age but is the most common cause of nephrotic syndrome in children. Minimal change disease is the diagnosis given when a patient has nephrotic syndrome and a kidney biopsy shows little or no change to the structure of the kidney filters (glomeruli) or the rest of the kidney tissue. Tiny drops of a fatty substance called a lipid may be present, but no scarring has taken place within the kidney.

Who gets it?

People of all ages can get minimal change disease, though it mostly affects young children in the pre-school age group.

Common Symptoms:

The most common symptoms are swelling around the eyes, face, belly, and legs. A person with minimal change disease may make less urine, gain weight, and become swollen during active phases of the disease.

What causes it?

The cause is not known but researchers are actively trying to learn more.

What is the treatment?

Usually the doctor will prescribe a drug called prednisone or prednisolone. This drug helps to stop the loss of protein in the urine and increase the amount of urine expelled from the body. Most patients will improve on this drug after several weeks of treatment.

Membranous Nephropathy (MN)

Membranous nephropathy is a kidney disease that is caused by a build up of proteins in the part of the kidney filter called the glomerular basement membrane. This part of the glomerulus is the thin tissue that helps separate the blood from the urine. In membranous nephropathy, the basement membrane becomes thick and damaged, allowing large amounts of protein to leak out of the blood and into the urine.

Who gets it?

Anyone can have membranous nephropathy, but it is more common in adults over the age of 40.

Common Symptoms:

Symptoms occur slowly and can include swelling, weight gain, and high blood pressure.

What causes it?

The cause is not known but researchers are actively trying to learn more.

What is the treatment?

For people with large amounts of protein in the urine, medications to suppress the immune system are often used. These include corticosteroids, cyclosporine, tacrolimus, and cyclophosphamide. Limiting salt in the diet and using medications to help the body get rid of extra salt and water are often helpful. Blood pressure medications that can decrease protein in the urine are also used. Sometimes medicines are prescribed to decrease the chance of blood clots, which can be a problem in patients with nephrotic syndrome and membranous nephropathy. The NEPTUNE study aims to understand membranous nephropathy to develop better treatments.

How is it diagnosed?

With results from blood tests, urine tests and, most importantly, a kidney biopsy, a doctor can determine if a person has membranous nephropathy.

Neptune Studies

Nephrotic Syndrome:

6801: The Nephrotic Syndrome Study Network (NEPTUNE) Longitudinal Cohorts

Status: 
Recruiting

NEPTUNE is a study network to improve the identification and management of patients with Nephrotic Syndrome (NS) from M inimal Change Disease (MCD), Focal and Segmental Glomerulosclerosis (FSGS), and Membranous Nephropathy (MN).  NEPTUNE includes study sites located at universities and medical facilities across North America and brings together patients, patient advocates, doctors and scientists working together to find better treatments for NS. The network allows experts from many areas to share research information to fast-track results that lead to new discoveries.

Why is research on Nephrotic Syndrome so important?

Because We Don’t Know Enough Yet. NS can lead to kidney failure and has an enormous impact on patients and families.  The number of people with NS is increasing and causes and effective treatments are still unknown. Research involving patients with NS can lead to a better understanding of the causes, more effective treatments and help find cures.

Why Minimal Change Disease (MCD), Focal Segmental Glomerulosclerosis (FSGS), and Membranous Nephropathy (MN)?

These are common causes of NS in adults and children.

Other Benefits of NEPTUNE?

  • NEPTUNE provides patient education on NS diseases
  • NEPTUNE has information about clinical research and clinical trial opportunities in NS
  • NEPTUNE can help patients and families connect with local experts
  • NEPTUNE includes a patient network and is connected with patient advocacy

For More Information: Visit NEPTUNE at clinicaltrials.gov

Click here for a list of our Participating Clinical Centers

NPACT - NEPTUNE Patient Advisory Council for Therapies


NPACT is a participant advisory panel consisting of patientsand parents of children with nephrotic syndrome.  The group meets 3-4times per year by teleconference to provide feedback on research study design,study materials, and to help develop study-specific patient reported outcomes.

We are looking for members to join our group!  We ask that you, or your child, have been diagnosed with either:

  • Nephrotic syndrome
  • Minimal change disease
  • Focal segmental glomerulosclerosis (FSGS)
  • Membranous nephropathy
If interested, please email NEPTUNEPAB@umich.edu for more information.

FAQs for NEPTUNE Participants

What else do I have to do to be in NEPTUNE besides my regular doctor’s orders?

We would like extra blood and urine at every visit, and sometimes we are going to request you to save your urine for 24-hours and bring it to us. Participating in NEPTUNE will not require any further treatment or obligations for your health care. The research is voluntary, but as a participant we would like you to complete study visits.

If I agree to participate in NEPTUNE, will I have to see my doctor more often?

Your NEPTUNE Research Coordinator will work with you to try to schedule the study visits at the same time as your regularly scheduled doctor’s visit. However, due to the follow-up periods, particularly in Year 1, you may need to come to the hospital/institution an extra time or two, but you will not need to see your doctor for study visits.

Will participating make my doctor treat me different?

Your participation in NEPTUNE will not change any care you would normally receive for your kidney disease.

Will it cost anything to be in NEPTUNE?

You will not be billed for any samples collected for the NEPTUNE study. All samples will be processed by study staff and no clinical tests will be performed on any samples that could be billed to you or your insurance.


Please Note: The Rare Diseases Clinical Research Network will make every effort to enroll all the patients we can, but we cannot make any guarantees that we will be able to enroll everyone in a particular study who wants to participate.

Patient Support and Advocacy Groups

Patient advocacy groups specializing in kidney disease and nephrotic syndrome are here to help you. They are devoted to providing support, resources and services for patients and families. Join these groups to help yourself, your family, and other patients.

NephCure Kidney International

NephCure Kidney International is the only organization committed exclusively to support research seeking the cause of the potentially debilitating kidney disease Focal Segmental Glomerulosclerosis (FSGS) and Nephrotic Syndrome, improve treatment and find a cure. NephCure also supports patients and their families with a variety of resources depending on your individual interests.

Visit nephcure.org | Download NephCure Brochure

Halpin Foundation

Halpin Foundation is a non-profit medical research organization that provides support to the medical community by offering grants for kidney disease research and autoimmune disease research.

To learn more or to join the Contact Registry for Membranous Nephropathy, visit: www.halpin.org