RECRUITING

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

Study Overview

This clinical trial focuses on testing the efficacy of different digital interventions to promote re-engagement in cancer-related long-term follow-up care for adolescent and young adult (AYA) survivors of childhood cancer.

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.

Official Title

Preparing a Clinical Outcomes Assessment Set for Nephrotic Syndrome

Quick Facts

Study Start:2022-04-18
Study Completion:2026-04-30
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT05505500

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.

Ages Eligible for Study:2 Years
Sexes Eligible for Study:ALL
Accepts Healthy Volunteers:No
Standard Ages:CHILD, ADULT, OLDER_ADULT
Inclusion CriteriaExclusion Criteria
  1. 1. Parents/guardians must be able to read and understand English;
  2. 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. 3. The child must have a current NS-associated edema
  4. 4. The child must have native kidney function
  5. 5. Parents/guardians must provide informed consent.
  1. 1. Index case with dialysis dependence throughout the 3-month pre-enrollment period

Contacts and Locations

Study Contact

Ashley Rahimi
CONTACT
734-647-5446
asboggs@med.umich.edu

Principal Investigator

Eloise Salmon, M.D.
PRINCIPAL_INVESTIGATOR
University of Michigan
John Peipert, Ph.D.
PRINCIPAL_INVESTIGATOR
Northwestern University

Study Locations (Sites)

University of Michigan
Ann Arbor, Michigan, 48109
United States

Collaborators and Investigators

Sponsor: University of Michigan

  • Eloise Salmon, M.D., PRINCIPAL_INVESTIGATOR, University of Michigan
  • John Peipert, Ph.D., PRINCIPAL_INVESTIGATOR, Northwestern University

Study Record Dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Registration Dates

Study Start Date2022-04-18
Study Completion Date2026-04-30

Study Record Updates

Study Start Date2022-04-18
Study Completion Date2026-04-30

Terms related to this study

Keywords Provided by Researchers

  • Nephrotic Syndrome
  • Child
  • Adult
  • Fluid Overload
  • Edema
  • FSGS
  • Minimal Change Disease
  • Membranous Nephropathy
  • IgM Nephropathy

Additional Relevant MeSH Terms

  • 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