Living with Anxiety Study (LwA)

Researchers are seeking individuals aged 18 years and over who have experienced an anxiety disorder at any time in their life.

Yes, you can participate in the study and complete the online survey.

Unfortunately, at this stage, we are unable to collect DNA samples from people living outside of Australia. Should you be returning to or visiting Australia during the next 12 months or so, 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.

• Reading and understanding the study information sheet;
• Providing consent for participating in the study;
• Providing consent for researchers to access your MBS and PBS records [optional];
• Providing contact information;
• Completing the online survey; and if eligible
• Donating a saliva sample.

After completing the core online survey, you may be asked to donate a saliva sample.

Researchers will send a saliva collection kit together with a pre-paid return envelope to selected participants.

We will extract DNA from the saliva to allow us to investigate genetic factors that influence whether a person will develop anxiety as well as genetic factors that impact how well different anxiety disorder treatments work.

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.

Your personal details, survey data 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.

The databases and samples are stored separately – 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 biological sample and DNA. This separation protects the confidentiality of participants. When results are published, 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 analysis at an individual level, but rather, will analyse 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.

Health professionals who work with people living with Anxiety disorders include GPs, psychiatrists, paediatricians, psychologists, mental health nurses, mental health social workers, and counsellors.

If you are experiencing mental health issues or suicidal feelings contact Lifeline on 13 11 14, Beyond Blue on 1300 224 636, Suicide Call Back Service on 1300 659 467 or Headspace on 1800 650 890. If it is an emergency call 000.

A copy of the LwA Participant Information Sheet can be found here.

In this study, we are not conducting clinical genetic testing. We are also not providing participants any personal or family information from the research. Because of this, under the current Australian guidelines you do not need to disclose to Insurers that you participated in this study. For further information, refer to section ‘A.2 Test Results’ of the Appendix A: Moratorium on Genetic Tests in Life Insurance Code of Practice (https://lifeccc.org.au/resources/life-insurance-code-of-practice/).

Please wait half an hour after smoking, drinking, eating, chewing gum, or brushing your teeth before you provide your 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.

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. Please call or email us using the contact details below if this is an issue.

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 (https://labportal.qimr.edu.au/File/Public/360).

Alternatively, please watch the instructional video here (https://www.youtube.com/watch?v=SJmSNI2l6Ug&feature=youtu.be).