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 the development of non-identical, or dizygotic, twins. Specifically, our study is trying to find genes for non-identical twinning so that we can better understand the genetic components involved in having twins, and learn more about female fertility and infertility.
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 are a passionate and dedicated team of researchers, scientists, students and support staff based in Brisbane, Queensland. The Genetic Epidemiology team, led by Professor Nick Martin, focus on finding genetic heritability for a variety of traits, conditions and diseases.
WHAT DIFFERENCE CAN I MAKE BY PARTICIPATING?
Genetic studies often require years of dedicated research, and rely heavily on the availability of accurate data. Volunteers like you are of crucial importance to help uncover more information about why some women are more likely to have twins than others, which will help us to also pinpoint genes relating to female fertility and infertility.
WHAT DOES THE SURVEY INVOLVE?
If you choose to participate, we will ask you to fill in a short questionnaire (online, 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?
- Register and complete a survey here
- We mail a collection kit to your nominated address
- You provide a salaiva sample yourself in your own home
- 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 have any further general queries about the Genetics of Dizygotic Twinning study, please see our contact details below:
Email: dztwinning@qimrberghofer.edu.au
Call: 1800 257 179
Write to: Locked Bag 2000, Royal Brisbane Hospital, Herston, QLD 4029, AUSTRALIA
VIDEO
Nick Martin featured in The House of Wellness season 6 talking about his study.
From all of us at QIMR Berghofer, we are hugely appreciative of your participation in our study.
Left: Professor Nick Martin
FREQUENTLY ASKED QUESTIONS
WHO CAN PARTICIPATE?
Volunteers must be:
- Female
- A mother of non-identical (dizygotic, or DZ) twins
- Aged 18 or over
We want to find genes for non-identical twinning, so we can understand why some women have non-identical twins, and others do not. To find genes, research studies need a large number of participants, so we would like to collect information from as many people in Australia as we can.
Unfortunately, at this stage, we are unable to collect DNA samples from people living outside of Australia. If you are returning to or visiting Australia in the next 12 months, you are welcome to undertake the survey then and we can forward a saliva sample collection kit to your Australian contact address. Just contact us 3-4 weeks before you arrive and we will see what we can arrange.
Participants in the Genetics of Dizygotic Twinning study will not be paid. However, Australians who choose to volunteer will be contributing to a national effort to unravel the genetics of DZ twinning, and we may as a result learn more about the genetics of twins and female fertility. Your participation is important to enable scientists to understand the genetic mechanisms of twinning.
WHAT IS THE PROCESS OF PARTICIPATING?
Volunteers must be able to:
- read and understand the online study information sheet
- Provide consent for collection of data for current and future study purposes
- Provide contact information
- Complete a 10-15 minute online survey about your twins and other pregnancies.
After completing the study, participant may be asked to donate a saliva sample, from which researchers can extract their DNA to identify specific genes associated with non-identical twinning. Researchers will send a saliva collection kit together with a pre-paid return envelope to selected participants.
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 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 aggregated together, so no individual results are included.
Participant DNA will be stored at QIMR Berghofer.
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 mechanisms of twinning.
The analysis we conduct on a participants saliva sample will not tell us that individual participants 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 DZ twinning from a large group of people.
When we publish results from the research, any genes identified relating to non-identical twinning will be publicly available in a scientific journal.
A copy of the participant information sheet can be found here: link
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