Observational Study
researchers track health outcomes over time in groups of participants to look for patterns that help us better understand a disease.
Prepare-NS
Preparing a Clinical Outcomes Assessment Set for Nephrotic Syndrome
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.
Trial Physician / Study Coordinator
Vivian Kurtz
Email Phone 734-936-3590Site Name
University of Michigan
University of Michigan, Ann Arbor, MI 48109
Observational Study
researchers track health outcomes over time in groups of participants to look for patterns that help us better understand a disease.
Prepare-NS
Preparing a Clinical Outcomes Assessment Set for Nephrotic Syndrome
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.
Eligibility Criteria
Patient Population
Focal Segmental Glomerulosclerosis (FSGS), Membranous Nephropathy, Minimal Change Disease, Nephrotic Syndrome, IgM Nephropathy
Age
2 — 26+
History of transplant allowed?
Yes, No
History of dialysis allowed?
No
eGFR
15 — > 60
UPCR
1.0 or Less — 3.0 or Above
Permitted medication history
Ace Inhibitors/ARB, Prednisone (Steroids), Abatacept, Acthar, Cellcept (AKA Mycophenolate), Cytoxan (Cyclophosphamide), Prograf (AKA Tacrolimus), Rituximab (AKA Rituxan), Other, None
Patient should be
Treatment Resistant, Steroid Dependent, Neither of These
About the Drug
What is involved for the patient
Behavioral interviews
Sponsor
University of Michigan
Estimated End Date
April 2026
About the Trial
Study Drug
N/A
Study Goal
The researcher's goal is to produce core outcome sets of patient-rated and observer reported Fluid Overload (edema) measures that can be applied across the fluid overload severity continuum, fit to help drug development in this area.
About the drug or intervention
N/A