Main Study | FAQ | Participate Now | Fact Sheet
Referred by a friend?We need volunteers who DO NOT have Parkinson’s disease, to help our scientists investigate the differences in environmental and genetic factors between people who have Parkinson’s disease and those who do not.
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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).
APGS aims to recruit thousands of participants with Parkinson’s disease to help scientists crack the code of Parkinson’s disease.
The study is also aiming to recruit participants who
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We have contacted study participants who have Parkinson’s disease and asked them to invite people they know, who are similar in terms of age, sex, background and geographical location, to take part in the study. This will enable us to compare environmental and genetic differences between people who have Parkinson’s disease and those who do not. Better understanding of 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?
Persons aged 45 and older who DO NOT have a diagnosis of Parkinson’s disease can participate in the control/reference group, if they have been invited by someone they know who has a diagnosis of Parkinson’s disease.
They must also live in Australia during participation and be able and willing to provide informed consent to participate in the study.
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 family history, medical history, lifestyle, and environmental risk factors.
After completing the online questionnaire, you may be asked to donate a saliva sample, from which researchers can extract your DNA to compare with the DNA of people who have Parkinson’s disease. This will help determine which genes are 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 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
Ready to participate?
Click on the button below:
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We thank the generous support of
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