FAQs

Participating in the study

Can I read the Participant Information Sheet before I agree to take part?

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

Can I take part if I’m living overseas?

Unfortunately, at this stage, we are unable to collect DNA samples from people living outside 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.

How will you use the survey, biological and genetic information data I give you?

Your health data and biological sample will be used strictly for medical research.

All research undertaken at QIMR must be approved by the QIMR Human Research Ethics Committee, to ensure that research projects that involve the use of health data and biological samples comply with the Commonwealth Privacy Act, National Health and Medical Research Council (NHMRC) guidelines, as well as other applicable national and state laws and regulations. This prevents researchers from using any sample or data collected from a participant without regulation and review from a third party.

Permission to use your health data and biological sample is sought through two stages: a scientific sub-committee that reviews the scientific merit of any data/sample sharing; followed by an ethics committee [made up of varying professions, laypeople and community members] who must determine whether the request is consistent with the participant’s original consent. If the committee does not approve, then researchers are not allowed to proceed unless they re-contact the participant seeking their permission to share/use their information.

We may also use your de-identified health data and sample for future medical research projects, but can only do so with permission from our institutional Human Research Ethics Committee.

At the end of the study, de-identified and limited participant survey and genetic data may be deposited in a large participant database that is accessed by researchers not directly involved in this study, but who will be investigating other medical diseases and disorders in the future. The repository is a controlled-access database which means only those authorised by a research ethics committee [undergoing the same application protocol as mentioned above] will be permitted access. The only identifier participant's data will have is a linkage ID. The key to linking this data back to your personal details is held securely by the QIMR Berghofer data research team and is not shared with anyone else.

How is the information I give you kept confidential?

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 QIMR Berghofer data collection research team. Internal access to these databases and samples are compartmentalised - 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 compartmentalisation protects the confidentiality of participants. When results are published they are done as aggregated data altogether, no individual results are included.

Will my entire DNA/Genome be sequenced?

Can I access my genetic data?

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.

Will the saliva sample tell you about my ancestry or health?

Will I get results from the study?

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 depression and the effects of anti-depressant medication will be publicly available in a scientific journal.

Do I have to disclose my participation to my life insurer?

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).

Completing the online survey

The online survey is comprised of a core module and a series of additional modules. The core module takes 15-20 minutes to complete and asks about your experiences with depression and anti-depressants. The additional modules ask about your family background, education, as well as your general physical and mental health. These additional modules take up to 40 minutes to complete and cannot be accessed until the core module is completed. A table of contents is included with these additional modules to help you navigate the remainder of the survey.

Both the core module and the additional modules are designed so that you can log off the survey at any time and return to where you left off by clicking the survey link you were emailed when you registered.

The survey remembers where you left off by saving a cookie in your browser; if the survey link can’t access this cookie, it cannot remember where you left off and will take you back to the beginning. So if you would like to complete the questionnaire over multiple sessions returning to where you left off each time, you need to use the same device and browser, which must have 'Cookies' enabled.

Some devices have cookies disabled as a default setting, while specific Internet settings such as ‘private browsing’ also disable cookies. You may need to check their device and browser settings if intending to do the survey over multiple sessions.

How do I get back in to complete the survey? – I haven’t completed the core module

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 Genetics of Risk and Response to Treatment of Depression (MDD) study.

You can access the questionnaire using the following link:

Link to questionnaire

The questionnaire will save your answers, allowing you to return to the last question you answered.

In order to return to where you were up to – 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, to continue your participation in the study, 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 begin again.

How do I get back in to complete the remaining survey modules?

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. This is the same link that you used to complete the core module (see #1 above).

In order to return to where you were up to – 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. Please note that even though you are sent to the start of the survey again, be assured that all the responses you completed have been saved and will be very valuable to our research.

The additional modules are optional and we have enough information from the core module to use your data for our research and for you to be eligible for the next stage, the provision of a saliva sample.

Once all the DNA collection is finalised later in the year, we will reactivate the survey for those who would like to complete more modules, but were unable to do so. We will email you in a few months with a new link to finish off the remaining modules.

The survey won’t accept my answer:

If you encounter a question that won’t accept your response, please just 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 get a message saying you have not answered a question on that page and you can (i) select that you want to answer it OR (ii) you don’t want to answer it and wish to go to the next question. Select the ‘Continue without answering …’ option and it should allow you to move on.

If you still find that you are unable to continue, you may wish to leave it and move on 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. The menu bar looks like this and is located at the top left corner of each screen.

If this does happen please let us know (at mddstudy@qimrberghofer.edu.au) the question and the answer that will not be accepted and we will append your answer at the back end.

It’s telling me I’ve completed the survey, but I haven’t finished it yet

If you are receiving a message saying you have already completed the survey, even though you haven’t, then it is possible that the ‘submit’ button was clicked instead of the button to take you back to complete the other modules.

I made a mistake, can I go back to change my answer?

My diagnosis/medication/circumstances have changed since I completed the survey, should I complete it again so it is now up-to-date?

With thousands of people undertaking the study, many may have their medication, lifestyle or health circumstances change since undertaking the survey. The survey is designed to be a snapshot at a particular point in time for each participant, so we don’t need any updated information from participants. Any change in circumstances does not impact on your DNA or your eligibility to participate in the provision of a saliva sample, so there is no need to complete the survey again.

I am using a tablet or smartphone and nothing happens when I tap on a response option; it won’t highlight or accept my response. What should I do?

The particular sensor point on touch screens can vary depending on the device being used and it can 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 even need to tap further to the right of the word to get the response button to highlight.

Providing a saliva sample

I am having trouble producing a saliva sample:

If you are having trouble producing a sample, please perform the following techniques:

visualise squeezing a half-lemon;
don’t wait for 30 mins after eating.

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.

I have provided a saliva sample but the sample is discoloured:

I don’t have a copy of the saliva sample collection instructions:

Participate in our survey to help us
better understand the genetics of depression

Take the survey

FAQs

Participating in the study

Completing the online survey

Providing a saliva sample

Participate in our survey to help us better understand the genetics of depression

Participate in our survey to help us
better understand the genetics of depression