Genetics of Parkinson's Disease Study

 

Our researchers are working hard to find better ways to prevent and treat Parkinson’s disease in Australia. Can you help us make the next breakthrough happen?

TAKE THE SURVEY

ABOUT THE STUDY

Researchers at QIMR Berghofer Medical Research Institute are inviting you to participate in an Australian research study that will investigate the genetic factors that influence
a person’s risk of Parkinson’s disease.

Specifically, our study is trying to find genetic variants that can help us understand, predict, and eventually prevent
Parkinson’s onset and progression.

WHO IS RUNNING THE SURVEY?

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.

WHAT DIFFERENCE CAN I MAKE BY PARTICIPATING?

Medical breakthroughs often require years of dedicated research, and can rely heavily on the availability of accurate, real-patient data. There are more than 110,000 people with Parkinson’s disease in our country. It is the most common major movement disorder and the second most prevalent neurodegenerative condition. Without medical research, Parkinson’s will remain a burden on society, on individuals and on carers. Volunteers like you are of crucial importance to help find a cure.

WHAT DOES THE SURVEY INVOLVE?

If you choose to participate, we will ask you to fill in a short questionnaire (online, over the phone, or via mail) and may ask you to supply us with a sample of saliva which we will use to extract your DNA. A caregiver or support person may help you  complete the questionnaire if you feel you are not able.

I AM READY TO PARTICIPATE – WHAT NEXT?

  1. Register and complete a survey here
  2. We mail a collection kit to your nominated address
  3. You provide a salaiva sample yourself in your own home
  4. Post the kit back to our laboratory in Brisbane using a pre-paid package

If you wish not to participate online you can also contact us to arrange a time to complete the questionnaire over the phone, or to have a paper questionnaire sent to you by mail.

CONTACT US

You may find that your query is listed on our Frequently Asked Questions Section below.

If you require any further general queries about the Australian Genetics of Parkinson’s Disease Study, please see our contact details below:

Call: 1800 257 179
Write to: Locked Bag 2000, Royal Brisbane Hospital, Herston, QLD, 4029, AUSTRALIA

From all of us at QIMR Berghofer, we are hugely appreciative of your participation in our study.

From left to right: Dr. Miguel E. Renteria, Associate Professor Penelope Lind, Professor Nick Martin

FREQUENTLY ASKED QUESTIONS

WHO CAN PARTICIPATE?

Volunteers must be:

  • Male or female.
  • Aged 30+.
  • Residing in Australia.
  • Have been treated for Parkinson’s disease.

The ‘Australian Genetics of Parkinson’s disease Study’ is a scientific undertaking aimed at identifying the genetic variants that not only predispose people to Parkinson’s disease, but also determine its progression. This knowledge is fundamental step in order to develop new treatments to slow down or stop the progression, and ultimately find a cure for the disorder.

Unfortunately, at this stage, we are unable to collect DNA samples from people living outside of Australia. However, we are currently looking into options for people living outside Australia who would like to participate further in the research. Alternatively, if you are returning to or visiting Australia in the next 12 months or so, you are welcome to undertake the survey then and we can forward a saliva collection kit to your Australian contact address – just contact us 3-4 weeks before you arrive and we can see what we can arrange.

Participants in the ‘Australian Genetics of Parkinson’s disease’ will not be paid. However, Australians who choose to volunteer will be contributing to a national effort to unravel the genetics of Parkinson’s disease, and may eventually learn more about their own potential genetic make-up with regard to Parkinson’s.

Your participation is important to enable scientists to understand the molecular mechanisms of the disease, and to eventually develop new treatments.

WHAT IS THE PROCESS OF PARTICIPATING?

Volunteers must be

  • Reading and understanding an online study information sheet;
  • Providing consent for collection of data for current and future study purposes;
  • Providing contact information; and
  • Completing a 20-minute long online survey about medical history and your experience living with Parkinson’s disease.

After completing the study, 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, its progression and treatment response. Researchers will send a saliva collection kit together with a pre-paid return envelope to selected participants.

QIMR Berghofer will biobank DNA from saliva samples for immediate and future genetic analysis.

CONFIDENTIALITY AND GENETIC DATA STORAGE

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.

QIMR Berghofer Medical Research Institute will extract DNA from the saliva samples.

Your personal details, questionnaire data, biological sample and genetic information will all be stored in separate, firewalled password protected databases, and the only link between your personal details and your other data is your participant identification number.

Linking your personal details and the other datasets using this number is restricted to members of the data collection research team. Internal access to these databases and samples are compartmentalized – the data collection team can only access your personal and survey information, analysts can only access your survey information and genetic data, and laboratory staff can only access your biosample and DNA [the latter two groups only have your ID number]. This compartmentalization protects the confidentiality of participants. When results are published they are done as aggregated data altogether, so no individual results are included.

Participant DNA will be stored at QIMR Berghofer Medical Research Institute.

This research is not designed to provide any clinical results to participants. The study does not undertake individual analysis of each sample provided, but rather will undertake an overall comparison of genetic markers on all samples provided.

If you have a personal interest in obtaining a genetic test on your DNA, we suggest you consider contacting a genetic testing entity which can provide such testing.

Your participation is important to enable scientists to understand the molecular mechanisms of the disease, and to eventually develop new treatments.

The analysis we conduct on a participant’s saliva sample will not tell us that individual participant’s health status, ancestry or predict health outcomes. Researchers are not looking for these particular genes in their analysis; rather they are searching for groups of common genes involved in Parkinson’s from a large group of people.

We certainly want to feedback as much as possible to participants about the study, so we provide all participants with an update of the project’s progress and results via email at the end of each data collection year.

Furthermore, when we publish the results from the research, any genes identified in the development, course or treatment of Parkinson’s disease will be publicly available in a scientific journal.

Doctors, Parkinson’s Specialist Nurses, Physiotherapists, Occupational Therapists and Speech Pathologists are among those who can provide advice on managing your disease. Many people also benefit from talking to other people who are similarly affected with the disease. Parkinson’s Australia’s State organisations can put you in contact with other individuals or support groups in your area.

If you are seeking information, resources or advice on Parkinson’s, please contact the Parkinson’s organisation in your home State or dial the info line 1800 644 189 and your call will be redirected to your home State office.

For more information, visit: https://www.parkinsons.org.au/find-support

A copy of the participant information sheet can be found here: link

In this study you do not need to disclose to Insurers that you have had a genetic test. This is because we are not providing participants any personal or family information from the research. The only results you will receive are those from the scientific papers we publish from the combined genetic analysis of all participants data. For further information, refer to this summary article discussing insurance and genetic research, as well as Section 10.3 of the Financial Services Council policy on genetic testing and research (fsc.org.au).

PROVIDING A SALIVA SAMPLE

If you are having trouble producing a sample, please visualise squeezing a half-lemon.

Please note that any volume is useful, even with bubbles.

If you are still unable to produce a sample, take a teaspoon of water, vigorously swish it around in your mouth and add that to the tube.

Even if your saliva sample is discoloured in the tube (e.g., lipstick or food scraps or blood), there is still plenty of your DNA in the tube for us to extract and use. Please return it to us and if we need you to provide another sample we will be in contact.

Please find instructions on how to provide a saliva sample into the tube here: Link

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