Opportunity for individuals impacted by
Nephrotic Syndrome

Do you or someone you know have Nephrotic Syndrome or related kidney disease such as Minimal Change Disease, FSGS, IgM Nephropathy, or Membranous Nephropathy?

Researchers are studying people’s experiences with swelling, or edema, and want to learn from those
impacted by Nephrotic Syndrome. The information collected from the interviews will be used to develop
a survey to use when testing new medications for Nephrotic Syndrome. Learn more about the
 Prepare-NS project here.


What is involved?

  • A one-hour long phone or Zoom interview

  • Receive $50 after the interview

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Who can participate?

 

 

 

 

 

 

 

 

 

 

If you are interested or would like more information, please contact the Prepare-NS team by calling 734-232-4830 or emailing Prepare-NS-study@umich.edu.

The study is sponsored by the U.S. Food and Drug Administration and conducted by researchers from the University

of Michigan and Northwestern University. It has been approved by The University of Michigan Institutional Review Board HUM00208148.

Group 1: Caregivers of children with nephrotic syndrome

  1. Parent/guardians must be at least 18 years old

  2. Must be able to read and understand English.

  3. Be 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.

Group 2: People with nephrotic syndrome

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  1. At least 8 years old

  2. Are able to read and understand English.

  3. Have a diagnosis of Nephrotic Syndrome or specific kidney disease that causes NephroticSyndrome, such as Minimal Change Disease, FSGS, IgM Nephropathy, or Membranous Nephropathy.

  4. Must have current swelling or a experiencedswelling within the past 3 months.

  5. Must not be receiving dialysis.