Opportunity for parents of children
with Nephrotic Syndrome

Does your child have Nephrotic Syndrome or related kidney disease such as Minimal Change Disease, FSGS, IgM Nephropathy, or Membranous Nephropathy?

Your participation in an interview study could help researchers get one step
closer to finding new therapies for Nephrotic Syndrome and other rare kidney diseases.

Researchers from the University of Michigan and Northwestern University are studying pediatric patient experiences with edema, or swelling, and are looking to learn from parents and guardians of children affected by Nephrotic Syndrome. The results of this study will be used to develop a survey tool to use in new Nephrotic Syndrome therapy testing.

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Participation involves:

  • A one-hour long phone or Zoom interview, during which we will ask about your and your child’s experiences with edema.

  • $50 compensation after the interview.

Parents/guardians may be able to participate if they meet the following requirements:

  1. Parent/guardians age at least 18 years old.

  2. Are able to read and understand English.

  3. Are caring for a child aged 2-11 years with a diagnosis of Nephrotic Syndrome or a specific kidney disease that causes Nephrotic Syndrome, such as Minimal Change Disease, FSGS, IgM  Nephropathy, or Membranous Nephropathy.

  4. Their child must have current swelling or a history of swelling within the past 3 months.

  5. Their child must not be receiving dialysis.

Learn more about the Prepare-NS project here.

If you are interested or would like more information, please contact the Prepare-NS team Call 734-232-4830

or

Email Prepare-NS@med.umich.edu

The study is sponsored by the U.S. Food and Drug Administration and has been approved by The University of Michigan Institutional Review Board HUM00208148.