Interview Study of Adult and Child Patients and Parents of Children with Swelling Due to Nephrotic Syndrome.

Description

Researchers from the University of Michigan and Northwestern University are studying people's experiences with swelling caused by Nephrotic Syndrome. Interviews with patients (child and adult) and parents of young children will be conducted. The information collected from the interviews will be used to develop a survey to use when testing new medications for Nephrotic Syndrome. Please consider participating in a 1-hour long interview with the Prepare-NS research study to discuss children and adults experiences with swelling.

Conditions

Fluid Overload, Glomerulosclerosis, Focal Segmental, Edema, Membranous Nephropathy, Minimal Change Disease, Minimal Change Nephrotic Syndrome, IgM Nephropathy, Nephrotic Syndrome, Glomerular Disease, Nephrotic Syndrome, Minimal Change, Nephrotic Syndrome in Children, Nephrotic Syndrome with Edema (Diagnosis), FSGS

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Study Overview

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Study Details

Study overview

Researchers from the University of Michigan and Northwestern University are studying people's experiences with swelling caused by Nephrotic Syndrome. Interviews with patients (child and adult) and parents of young children will be conducted. The information collected from the interviews will be used to develop a survey to use when testing new medications for Nephrotic Syndrome. Please consider participating in a 1-hour long interview with the Prepare-NS research study to discuss children and adults experiences with swelling.

Preparing a Clinical Outcomes Assessment Set for Nephrotic Syndrome

Interview Study of Adult and Child Patients and Parents of Children with Swelling Due to Nephrotic Syndrome.

Condition
Fluid Overload
Intervention / Treatment

-

Contacts and Locations

Ann Arbor

University of Michigan, Ann Arbor, Michigan, United States, 48109

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

For general information about clinical research, read Learn About Studies.

Eligibility Criteria

  • 1. Parents/guardians must be able to read and understand English;
  • 2. Parents/guardians must be caring for a child (ages 2-11.999) with a medically documented diagnosis of idiopathic (primary) Nephrotic Syndrome (NS) or primary or monogenic NS associated kidney disease. Populations with Primary NS Conditions: Focal segmental glomerulosclerosis (FSGS), Minimal Change Disease (MCD), Immunoglobulin M (IgM) Nephropathy, Membranous Nephropathy (MN), and childhood - onset nephrotic syndrome not biopsied;
  • 3. The child must have a current NS-associated edema
  • 4. The child must have native kidney function
  • 5. Parents/guardians must provide informed consent.
  • 1. Index case with dialysis dependence throughout the 3-month pre-enrollment period

Ages Eligible for Study

2 Years to

Sexes Eligible for Study

ALL

Accepts Healthy Volunteers

No

Collaborators and Investigators

University of Michigan,

Eloise Salmon, M.D., PRINCIPAL_INVESTIGATOR, University of Michigan

John Peipert, Ph.D., PRINCIPAL_INVESTIGATOR, Northwestern University

Study Record Dates

2026-04-30