Developing Patient and Observer Surveys for Swelling in Nephrotic Syndrome in Children and Adults

What this Trial Is About

Researchers from the University of Michigan and Northwestern University are studying experiences of swelling caused by Nephrotic Syndrome in both children and adults. This observational study aims to gather detailed information from interviews with patients and parents to help develop new survey tools that assess fluid overload symptoms and impacts. The goal is to create core outcome measures that can be used in drug development focused on edema in Nephrotic Syndrome. Participants will take part in one-hour concept elicitation interviews to share their experiences with swelling related to Nephrotic Syndrome. There are two groups involved one helping to create an Observer Reported Outcome ObsRO tool based on parents observations, and another helping to develop a Patient Reported Outcome PRO tool based on patient self-reporting. This study involves gathering information only, with no experimental treatments. During the study, participants will complete interviews lasting about 60 minutes, where they discuss the impact of fluid overload on symptoms and daily functioning. Researchers will analyze these discussions to build validated survey tools that can measure patients and observers perspectives of edema. Participation involves sharing experiences through interviews, and the study aims to better understand swelling effects to support future medication testing. The study continues until April 2026.

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