GENIE STUDY

GENomic Predictors in A Multi-Ethnic population with Kidney Disease Study

approved by WSLHD HREC 2025

We invite you to participate in the GENIE study - where we are trying to find genetic factors which influence people's risk of developing kidney disease (see "Why are we doing this study").

We are currently recruiting

Volunteers without kidney disease (aged 18 years and over)
Volunteers with any forms of kidney disease
- Chronic kidney disease (CKD)
- Receiving dialysis (any form)
- Living with a kidney transplant

To better represent our diverse population we encourage people of all backgrounds, ethnicity and gender to participate!

Get in touch

If you are interested in being part of this study, enter your details using the link or QR code

Get in touch

Disclaimer: there is no financial reimbursement for participating in this study.

Why are we doing the study?

Kidney disease is a devastating (and often silent) disease. More information about kidney disease can be found on the national Kidney Health Australia Website.

Major risk factors for chronic kidney disease are diabetes, hypertension, obesity, family history, medication adherence and various socio-economic influence.

We believe there may be genetic risk factors (more than the usual ones listed above) which increased risk of kidney disease (or more severe disease) in certain individuals.

We want to see if genetic risk factors can predict

The susceptibility to experiencing kidney disease and related complications

The risk of progressive kidney disease and/or treatment failure

This new information might be used in the future to help guide doctors to tailor management to the individual with kidney disease.

Ultimately, we want to improve how we prevent, diagnose and optimise kidney disease for people and their communities, families and loved ones.

What will I have to do?

Screening and enrolment

We will ask you a few questions to find out whether you have (or at risk) of kidney disease. If you satisfy these criteria and consent to be part of the study, you will be formally enrolled (included). We do this to ensure that your time and precious samples are not wasted.

You will be enrolled into either one of the following groups

Volunteers without established kidney disease but with risk factors for kidney disease

Participants with chronic kidney disease (CKD) based on pre-existing blood tests

Participants with kidney failure and are on dialysis (for at least 3 months)

We will ask you to participate in surveys

We will ask you fill in a survey at the start of the study (required for all participants). We will also send you a survey every 5 years after joining the study asking about kidney disease and general health.

These additional surveys are optional but will help us work out which genetic variations are associated with kidney disease and health.

We will ask you to provide blood samples

We will ask you for a sample of blood (approx. 10 teaspoons worth) which we will store for future use, including storage of DNA (genetic information) and proteins.

This is critical to check if different genes and/or proteins influence your risk (or severity) of kidney disease in the future. We may ask for urine, faecal samples, or access any left over kidney tissue that's kept in hospital storage (only if you had a kidney biopsy performed).

Other parts of the study

Review medical data

There is nothing you need to do for this part. We will collect basic health data which is critical for us to determine whether different genetic factors influence health and kidney disease.

We will review the electronic medical records every year for the first 5-years, then review the electronic medical records every 5-years.

If required, we may ask for linkage to national health databases (using secure methods)

Data security

All collected information (health data, surveys, blood samples etc) will be kept on secure databases and NOT be shared with any insurance or commercial companies.

Any form of data sharing will always require ethics approval and use a de-identified code (meaning it cannot trace it back to you).

Thank you for your time

We encourage you to be join us as we try to improve our understanding of kidney disease. Hopefully, this helps doctors provide earlier diagnosis and better treatment for everyone affected by kidney disease in the future.

Thank you from the investigators on the GENiE team. If you have any questions, you can contact us by email: kidney.studies@wimr.org.au