Do you have a rare kidney disease like FSGS, IgA Nephropathy, or other Nephrotic Syndrome condition? You’ve come to the right place.
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Currently Enrolling
Genetic Study for Kidney Patients

Genetic Research into FSGS, Nephrotic Syndrome, Unexplained Proteinuria, and Unexplained Kidney Failure

Brief Description

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.

Trial for people with

Primary focal segmental glomerulosclerosis (FSGS), nephrotic syndrome, unexplained proteinuria, and/or unexplained kidney failure

Study Goal

The Genetic Research Study hopes that by identifying genetic causes of kidney disease, better treatments can eventually be made for patients living with these conditions.

What is involved for the Patient?

Patients will share a saliva sample with the lab. The kit will be mailed to the patient, and the patient will then mail their sample back to the lab.

About the drug or intervention

Learn more at

  • Study CoordinatorAndrea Knobb at The Pollak Lab
  • Study Coordinator 
  • Study Coordinator Phone617-667-0467 
    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.
    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 or email


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