New study opportunity for parents of children with Nephrotic Syndrome
Your participation in the Prepare-NS interview study could help researchers get one step closer to finding new therapies for Nephrotic Syndrome and other rare kidney diseases.
Does your child have Nephrotic Syndrome or related kidney disease such as Minimal Change Disease, FSGS, IgM Nephropathy, or Membranous Nephropathy?
Please consider participating in the Preparing a Clinical Outcomes Assessment Set for Nephrotic Syndrome (Prepare-NS) research study, which explores ways that edema (or swelling) affects children.
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.
Your participation would involve:
A one-hour long phone or Zoom interview, during which we will ask about your and your child’s experiences with edema.
A $50 compensation after the interview.
Parents/guardians may be able to participate if they meet the following requirements:
Parent/guardians age of at least 18 years old.
Are able to read and understand English and are living in the United States.
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.
Your child must have current swelling or a history of swelling within the past 3 months.
Your child must not be receiving dialysis.
Your participation in the Prepare-NS interview study could help researchers get one step closer to finding new therapies for Nephrotic Syndrome!
If you are interested or would like more information, please complete the contact form below and a member of our research team will get back to you soon.
The study is sponsored by the U.S. Food and Drug Administration and has been approved by The University of Michigan Institutional Review Board HUM00212827.