Humanistic Burden of FSGS and IgAN (HONUS)
Research type
Research Study
Full title
Humanistic Burden of Rare KidNey Diseases: Understanding the Impact of FSGS and IgAN on Patients and Caregivers Study (HONUS) - A Multi-National, Cross-Sectional Survey Study
IRAS ID
303577
Contact name
Justyna Szklarzewicz
Contact email
Sponsor organisation
Travere Therapeutics, Inc.
Duration of Study in the UK
0 years, 3 months, 3 days
Research summary
Focal segmental glomerulosclerosis (FSGS) is a rare glomerular disease characterized by proteinuria, reduced renal function, and progression to end-stage renal disease (ESRD). Immunoglobulin A nephropathy (IgAN), is another rare kidney disorder characterized by the buildup of immunoglobulin A (IgA) in the kidneys, reducing renal function, and progression to ESRD. While both conditions have been shown to be associated with significant clinical and economic burden to healthcare systems, less is known about the humanistic burden associated with these diseases. HONUS is a global research study focused on understanding the real-world impact of these two rare kidney diseases (i.e. FSGS and IgAN) on patients and their care-partners using a survey. Specifically, health-related quality of life, productivity, disease-related symptoms and other impacts of the diseases will be assessed.
REC name
East of England - Essex Research Ethics Committee
REC reference
22/EE/0093
Date of REC Opinion
21 Jul 2022
REC opinion
Further Information Favourable Opinion