Patients and Caregivers Study

Humanistic Burden of Rare KidNey Diseases: Understanding the impact of FSGS and IgAN on Patients and Caregivers Study (HONUS)

HONUS is a global research study designed specifically to understand the impact of two rare kidney diseases on patients and their caregivers.

The survey will collect information on:

And to better understand the burden people face, including:

Who can participate?

Reimbursement for time

All participants completing the survey will be eligible for reimbursement of their time to a total value of $50 (Links to download an Amazon gift card will be provided on survey completion).

Why participate?

Although there are no direct health benefits to you for participating in this research study, your participation may help people with FSGS or IgAN in the future by increasing awareness and understanding of patients’ experience with these diseases and how it impacts people’s lives.

How to get involved?

If you are interested in being involved, please provide contact information below. If you have questions feel free to reach out to Alena@igan.org 

We will follow up with you directly to confirm your participation.


  • Hall, Y.N., Fuentes, E.F., Chertow, G.M. et al. Race/ethnicity and disease severity in IgA nephropathy. BMC Nephrol 5, 10 (2004). https://doi.org/10.1186/1471-2369-5-10
  • Kiryluk K, Li Y, Sanna-Cherchi S, Rohanizadegan M, Suzuki H, et al. (2012) Geographic Differences in Genetic Susceptibility to IgA Nephropathy: GWAS Replication Study and Geospatial Risk Analysis. PLoS Genet 8(6): e1002765. doi:10.1371/journal.pgen.1002765