Humanistic Burden of (FSGS) Focal Segmental Glomerulosclerosis and IgAN (Immunoglobulin A Nephropathy)

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

The aim of this observational study is to assess humanistic burden among adults and children/adolescents with FSGS and IgAN as well as the burden and impact for patient care-partners in six countries (United States [US], United Kingdom [UK], France, Germany, Italy and Spain).

Inclusion Criteria:

• Adult patients and their adult care-partners: At least 18 years old; Either have a physician-provided diagnosis of FSGS or IgAN (with renal biopsy confirmation of the diagnosis) or being a care-partner for someone with a physician-provided diagnosis of FSGS or IgAN (with renal biopsy confirmation of the diagnosis);

• Able to provide informed consent;

• Located in the United States (US), United Kingdom (UK), Germany, France, Spain or Italy.

  *Care-partners (paired with adult patients) (defined as the individual [e.g., spouse, parent, sibling, relative, or friend] providing direct disease-related support to the adult patient.

  **All patient groups including chronic kidney disease (CKD) stage 1-5, with or without dialysis, and with or without kidney transplant will be included.

• Care-partners/parents of children/adolescents: At least 18 years old;

• Being a care-partner of children/adolescents with physician-provided diagnosis of FSGS or IgAN (with renal biopsy or genetic confirmation of the diagnosis);

• Able to provide informed consent; Located in the US, UK, Germany, France, Spain or Italy.

  • Care-partners will be defined as family members who provide disease-related support and unpaid care to child/adolescent patients

Exclusion Criteria:

• Patient has FSGS or IgAN secondary to another condition;
• Patient has a history of malignancy other than adequately treated basal cell or squamous cell skin cancer;
• Patient has a co-existing glomerular disease (e.g., membranous nephropathy, lupus nephritis);
• Patient is currently participating in a kidney disease clinical trial, and potentially receiving active treatment as part of the trial.