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.
Study Process
Participants in the study complete a ~25 minute online (or paper-based questionnaire) and provide a saliva sample using a kit sent via traditional post.
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.
Participation
Recruitment for the Australian Parkinson’s Genetics Study is now closed. We are thrilled to announce that we have reached our ambitious target of 20,000 participants (10,000 cases and 10,000 controls).
To everyone who volunteered—thank you. Your contribution is vital to helping us "crack the code" of Parkinson’s disease. We are now moving into the next exciting phase: analysing this massive dataset to find the genetic keys to the disease.
Due to the overwhelming and unprecedented response from the Australian community, we are currently processing a significant backlog of registrations. If you have registered but haven't received your saliva kit yet, please be patient. We are working through the logistics to get these sent to you as soon as possible. You do not need to register again.
In the coming months, we will begin sending out a "Follow-Up Questionnaire" to gather further insights. Keep an eye on your inbox for updates on the study’s progress!
You can contact us by calling 1800 257 179 or by writing an email to: pd.genetics@qimrb.edu.au. Please note, we are currently experiencing high email and call volumes.
You can also send a letter to the following address:
Kerrie McAloney – APGS Project Coordinator
Locked Bag 2000
Royal Brisbane Hospital
Herston, QLD, 4029, AUSTRALIA
Watch the video for more information about the study.
Watch the video for more information about the study.