Frequently Asked Questions
Participating in the Living with Anxiety study
A copy of the Living with Anxiety (LwA) study Participant Information Sheet can be found here.
For eligible participants, the LwA study will also involve providing a saliva sample, which can be done in the comfort of your own home. Even though not everyone will be asked to donate a saliva sample, all information provided in the survey is extremely valuable to our research. You can also choose to complete the surveys but not provide a saliva sample.
Your saliva sample will be used to extract DNA, which will then be analysed for differences and similarities among participants. This information can help us understand why some people develop conditions like an Anxiety Disorder, or why treatments work differently for individuals.
Your saliva and DNA samples will be securely stored at QIMR Berghofer, along with samples from other LwA Study participants. Your samples will be stored separate to your personal details and will only be re-identifiable via a barcode label. Only authorised members of the QIMR Berghofer research team will be able to link your personal information with your samples.
If necessary, part of your sample may be sent to another laboratory, potentially overseas, for analysis. Your sample will be labelled with a number, and no personal information will be shared with the other laboratory. Any remaining sample will be destroyed after processing.
We will also store your DNA for future research studies which could be unrelated to the current project. While there is no direct benefit to you, your samples may be used by researchers to explore other diseases and to improve health outcomes. Before proceeding on any future use, all research must seek QIMR Berghofer Human Research Ethics Committee (HREC) approval.
Unfortunately, at this stage, we are unable to collect DNA samples for the LwA study from people living outside Australia.
Should you be returning to or visiting Australia during the next 12 months or so, you are welcome to take our online survey then, and we can forward a saliva collection kit to your Australian contact address should you qualify. Simply contact us 3-4 weeks pre-arrival, and we will see what we can arrange.
All personal, questionnaire, and genetic data collected in the study will remain confidential, following NHMRC ethical guidelines and the Privacy Act. Data will be stored separately, with a participant identification number linking personal details to other data. Only select members of the QIMR Berghofer team will have access.
Any Medicare Benefits Schedule (MBS) and Pharmaceutical Benefits Scheme (PBS) data provided will be used solely for this study, and cannot be shared without government approval. All data will be deleted seven years after the final report, but research findings related to MBS/PBS data will not be destroyed.
Personal, questionnaire, and genetic information may be stored indefinitely at QIMR Berghofer for future research, subject to ethics approval. Genetic and questionnaire data may also be shared with an international genetics database, with personal information kept confidential.
Results may be published in scientific papers, or presented publicly without revealing your identity. You have the right to access and request corrections to your data. By consenting online, you agree to the collection and use of your data for this research.
This research is not designed to provide any clinical results to participants. The study does not undertake analysis at an individual level, but rather, will analyses data at the group level. This means that we will not be generating individual level results that can be shared with individual participants. We will be sharing the results from these group level analyses in future study updates which participants can choose to receive.
This research is not intended for the purpose of treating any health problem you may have. Participation in this research study does not take the place of visits to a doctor or other healthcare professionals. Please note that genotype results are for research purposes only. They are not intended and validated for clinical purposes.
No, Participation in this research project is voluntary. If you do not wish to participate, you do not have to.
The project investigators do not have your name or contact details unless you provide them. So, if you do not wish to take part, you do not have to do anything. If you decide to participate and later change your mind, you are free to withdraw from the project at any stage.
You are under no obligation to continue with the research study. People withdraw from studies for various reasons, and you do not need to provide a reason. You can withdraw from the study at any time by contacting the research team and requesting a withdrawal of consent form to complete and sign.
Should you withdraw from the study, your survey and genetic data will be withdrawn/destroyed. However, data that has already been analysed and/or included in a publication may not be able to be withdrawn/destroyed. Information would only be retained if required by law. Your privacy will continue to be protected at all times.
This study is unlikely to be of any immediate and specific benefit to you. Extensive research is required to find answers to the questions we are studying. However, future medical or scientific discoveries may come from the research in which you participate. These may help improve the available treatments and outcomes for people living with Anxiety Disorders.
Due to the design of the study, we will not be able to provide any individualised feedback to participants about their health, saliva sample, or DNA. However, our researchers will be providing everyone who participates, with study updates.
Our research team greatly value the time and effort that you will be giving to our research.
You may feel some of the questions in our survey are stressful or upsetting. If you do not wish to answer a question, you may skip it and go to the next question or stop immediately.
Should you become uncomfortable or distressed, and wish to speak to someone about this, you may contact:
- Lifeline (offer free, confidential psychological support: 13 11 14)
- Beyond Blue (provide free, confidential psychological support: 1300 22 4636).
If your responses to our online survey questions indicate you are at significant risk of serious harm, you will be provided with specific advice on how to access appropriate counselling, support, or formal health care.
If you have questions about the study, you can contact our researchers via phone or email.
Free call: 1800 257 179
Email: lwa@qimrb.edu.au
Completing the LwA online survey
The LwA online survey comprises of a core module and a series of additional modules. The core module takes approximately 30 minutes to complete and focuses on your experiences with anxiety. The additional modules are optional and explore your family background, relationships, education, and general physical and mental health. The additional modules are only accessible after completing the core module. A table of contents is provided to help guide you through the additional modules and will let know about how long each module will take to complete.
For your convenience, you can start the core survey and return to it later when you wish. To continue where you left off, simply click the survey link sent to you upon registration. The survey uses cookies to remember your progress. If the link cannot access this cookie, you will be redirected to the start of the survey. For an uninterrupted experience over multiple sessions, it is important to use the same device and browser, with cookies enabled.
Some devices may have cookies disabled by default, and features like ‘private browsing’ also prevent cookies from being stored. If you plan to complete the survey over multiple sessions, you may need to adjust your device and browser settings accordingly.
In order to return to complete the survey, you will need to open the link that was emailed to you, using the same device and the same browser. The email looks like this, and the link is circled in red:
Thanks Participant for agreeing to participate in the Living with Anxiety (LwA) study.
You can access the questionnaire using the following link:
Link to questionnaire
Please note every participant has their own unique survey link; please do not forward this link to anyone else.
The questionnaire will save your answers, allowing you to return to the last question you answered.
To return where you left off, you would need to have had your cookies enabled when you first logged in. If you find that you are returned to the beginning, even though you are on the same device and browser, cookies may not have been enabled.
If you are returned to the beginning, you will need to start the core module again. If you are willing to do this, please return to the email we sent you when first started, and click the survey link to restart.
In order to return to complete the additional survey modules, you will need to open the link that was emailed to you, using the same device and the same browser. This is the same link that you used to complete the core module.
In order to return to where you left off, you would need to have had your cookies enabled when you first logged in.
If you find you are returned to the beginning, even though you are on the same device and browser, cookies may not have been enabled. If this happens, please email us and we’ll send you a new link to let you pick up where you left off.
Should you encounter a question that won’t accept your response, please leave that question blank. If you already have a number in there, remove it, and then when you’ve answered every other question on that page, click ‘continue’. You may receive a response message stating you have not answered a question on that page, and you can:
(i) select that you want to answer it; OR
(ii) if you don’t want to answer it and wish to proceed to the next question, select the ‘continue without answering …’ option and it should allow you to move on.
If you still find you are unable to continue, you may wish to leave it and move to the next module. To do this, click on the ‘Return to Table of Contents’ on the bottom of your screen, or if using a mobile device, click on the menu bar, which looks like this and is located at the top left corner of each screen.
Should this occur, please email lwa@qimrb.edu.au to advise the non-acceptance of your question and answer and we will amend your answer at the back end.
If you receive a message saying you have already completed the survey, even though you haven’t, then it is possible the ‘submit’ button was clicked instead of the button to take you back to complete the other modules. Please email us and let us know.
Yes, you can go back and change an answer within a section [by clicking the << Back button]. Unfortunately, our survey design does not allow you to go back to change an answer between sections.
This is because changing answers may take you down a different pathway, and lead to inconsistent data being recorded in your survey.
If you recall which questions you answered incorrectly, please advise the research team how you were planning to respond at lwa@qimrb.edu.au and we can amend your answer at our end, once your survey is submitted.
The survey is designed to be a snapshot at a particular point in time for each participant, so we don’t require any updated participant information.
Any change in circumstances does not impact your DNA, nor your eligibility to provide a saliva sample. So, there is no need to complete the survey again.
The particular sensor point on touch screens can vary depending on the device being used and may even vary depending on the structure of the question and responses. If nothing happens when you tap on the response button (like below), try tapping over the word to see if that highlights the response. If that doesn’t work, you may need to tap further to the right of the word to get the response button to highlight.
Providing a saliva sample
If you are having trouble producing a sample, please:
- visualise squeezing a half-lemon; or
- think about eating your favourite food
Please note any volume of saliva is useful, even with bubbles in it.
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.
If you find the saliva collection kit is not suitable for you to use, please let us know as there are other sample collection options available that we can provide.
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.
Alternatively, please watch the instructional video here:
https://youtu.be/SJmSNI2l6Ug