Assessment of the Educational Experiences for Patients Newly Diagnosed With Nephrotic Syndrome

Nephrotic Syndrome Clinical Trial

Official title: Assessment of the Educational Experience for Patients With Newly Diagnosed Nephrotic Syndrome

Status Completed

Clinical Trial Summary

The purpose of this study is to learn about patient, caregiver and healthcare worker perspectives on educating patients with newly-diagnosed Nephrotic Syndrome. All patients enrolled in the Contact Registry with Nephrotic Syndrome will be invited via email to participate in this study.

Clinical Trial Description

The survey included questions addressing the following areas: 1.) Information that is important to know when learning to manage Nephrotic Syndrome. 2.) Preferred resources for the education of patients and caregivers with newly-diagnosed Nephrotic Syndrome. 3.) The time frame required to acquire confidence in the management of Nephrotic Syndrome. 4.) Disease-specific information such as diagnosis, length of disease duration, medications used, need for kidney biopsy, dialysis and/or transplant. 5.) Demographic data such as race/ethnicity and educational background.

The survey data is stored by the Rare Diseases Clinical Research Network's Data Management and Coordinating Center (DMCC) at the University of South Florida. The data is de-identified. Names or other personal health information were not collected. Upon conclusion of the study period, the data will be sent to the NEPTUNE consortium lead at the University of Michigan. ;

Study Design

Observational Model: Cohort, Time Perspective: Cross-Sectional

Related Conditions & MeSH terms

• Nephrosis
• Nephrotic Syndrome
• Syndrome

• NCT number: NCT02190955
• Study type: Observational [Patient Registry]
• Source: University of South Florida
• Status: Completed
• Phase: N/A
• Start date: January 2013
• Completion date: May 2014