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You can help our scientists crack the genetic code of Parkinson’s disease by completing an online questionnaire and donating a saliva sample from the comfort of your own home.

About the study

The Australian Parkinson’s Genetics Study (APGS) is a nationwide research study run by the QIMR Berghofer Medical Research Institute in Brisbane and funded by the Shake It Up Australia Foundation (SIUAF) and The Michael J. Fox Foundation (MJFF).

The APGS aims to recruit thousands of participants with and without Parkinson’s disease, to help scientists crack the code of Parkinson’s disease. This will enable us to search for the genes behind the disease, and compare environmental and genetic differences between people who have Parkinson’s and those who do not. Better understanding the genetic basis of Parkinson’s is essential to accelerate the discovery of new drug therapies to prevent, slow, stop and cure Parkinson’s Disease.

Who can participate?

Volunteers with Parkinson’s disease who are:

Male or female
Any age
Diagnosed with and treated for Parkinson’s disease
Residing in Australia at the time of participation

Volunteers who DO NOT have Parkinson’s who are:

Male or female
45 years of age or older
No family history or diagnosis of Parkinson’s disease
Residing in Australia at the time of participation

What does participation involve?

Participation is easy and can be done from the comfort of your home. It involves a ~25 minute online (or paper-based) questionnaire and providing a saliva sample using a kit sent via traditional post.

The online questionnaire will ask information such as your contact details and questions about your experience with the disease, family history, medical history, lifestyle, and environmental risk factors.

After completing the online survey, participants may be asked to donate a saliva sample, from which researchers can extract their DNA to identify specific genes associated with Parkinson’s disease. Researchers will send a saliva collection kit together with a pre-paid return envelope to selected participants.

Who is running the study?

QIMR Berghofer is a world-leading medical research institute, renowned for our efforts in both discovery and translational (real patient setting) research. We research cancer, mental health, infectious diseases, and chronic disorders. We are a passionate and dedicated team of almost 900 researchers, scientists, students, and support staff based in Brisbane. Our scientists are creating The Future of Health by discovering more effective ways to prevent, diagnose and treat diseases.

Confidentiality and Ethics

Study participation is strictly confidential. All patient information provided will be maintained in accordance with the Commonwealth Privacy Act (1988) and National Health and Medical Research Council (NHMRC) Guidelines.

This study and the contents of the questionnaire have been reviewed and approved by the QIMR Berghofer Human Research Ethics Committee (P3711).

You can find out more about confidentiality and genetic data storage in our FAQs section.

Can I answer a paper-based questionnaire instead of the online version?

Yes. You can contact us to have a paper questionnaire sent to you by traditional mail. You can request this by calling 1800 257 179, writing an email to pd.genetics@qimrberghofer.edu.au or sending a letter to the following address:

Kerrie McAloney – APGS Project Coordinator
Locked Bag 2000
Royal Brisbane Hospital
Herston, QLD, 4029
AUSTRALIA

Further information

A copy of the participant information sheet for people with Parkinson’s disease can be found here

A copy of the participant information sheet for volunteers who DO NOT have Parkinson’s disease can be found here

You can learn more through checking the fact sheet here

You can find answers to Frequently Asked Questions about the study here

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