Participating in EDGI2
Any Australian aged 18 years and over who is currently living with, or has experienced at any point in their lives, anorexia nervosa, bulimia nervosa, binge eating disorder, and avoidant restrictive food intake disorder (ARFID) can participate in the study.
Participating in EDGI2 could make a genuine contribution to improved understanding of the diagnosis, management and treatment of eating disorders.
Researchers have only scratched the surface in understanding the causes of eating disorders. EDGI2 researchers propose to further understand the biology of eating disorders, and in turn, the pathways and systems that influence these complex diseases.
EDGI2 participants will not be paid. However, Australians/those who choose to volunteer will be contributing to the global effort to unravel the genetics of eating disorders, which in turn may help improve the available treatments and outcomes for people living with anorexia nervosa, bulimia nervosa, binge-eating disorder and ARFID.
There are also no additional costs associated with participating in this study.
Unfortunately, at this stage, EDGI2 Australian researchers are unable to collect DNA samples from people living outside Australia.
However, as this is an international study, we have collaborators in New Zealand, USA, Mexico and Denmark who are also recruiting for EDGI2. Please visit the relevant websites below for more information:
The initial EDGI study successfully identified a selection of genes associated with eating disorders. EDGI2 seeks to expand on this, by further uncovering the dozens of genes that influence a person’s risk of developing an eating disorder. A fourth eating disorder, ARFID, has also been included in EDGI2.
EDGI1 participants can participate in EDGI2 and complete our online survey. However, these participants will not need to provide another DNA/saliva sample.
Our researchers will use EDGI1 participant’s survey data to update their status and further collect new information on any other experiences they have had with eating disorders.
What is the process of the EDGI2 study?
Study participation in EDGI2 involves providing informed consent and completing a short 15-minute online survey about experiences with eating disorders. This compulsory module will be used to determine eligibility to the DNA phase of the study. Participants will also be given the option to complete other short survey modules on important experiences related to eating disorders including mood, treatment and personality (approximately 30 –40 minutes in total). Completion of these extra modules is not required to be eligible for the genetic phase of the study.
- After completing the survey, eligible participants will be asked to donate a saliva sample.
- Researchers will send a saliva collection kit together with a pre-paid return envelope to eligible participants.
Providing 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.
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.
Confidentiality and genetic data storage
Study participation is strictly confidential. All participant information provided will be maintained in accordance with the Commonwealth Privacy Act (1988) and National Health and Medical Research Council (NHMRC) Guidelines. Research information will be de-identified before being sent overseas for analysis.
Your personal details, questionnaire data, biological sample and genetic information will all be stored in separate, firewalled password protected databases. 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 so as aggregated data, with no individual results included.
EDGI2 researchers will extract DNA from saliva samples to identify specific genes associated with eating disorders.
Your genetic information and some of your questionnaire information may eventually be put into an international genetics data repository. Information in the database will be available only to researchers for, around the world who are approved to study how genes cause of health conditions.
A full description of sample and data storage is given in the participant information sheet and consent form.
Your biological sample and extracted DNA samples will be stored securely at QIMR Berghofer Medical Research Institute along with samples from many other people. They will be re-identifiable, which means that they will be stored with a barcode label, and can be identified as yours even though your personal details are stored separately. Linking your personal details with your biological sample or DNA using the barcode is restricted to members of the QIMR Berghofer research team.
We may send a small portion of your DNA to a scientific research repository established by the National Institutes of Mental Health (NIMH) in the USA for indefinite storage. If this occurs, your part sample will only be labelled with a unique number, a number not used in any other phase of the study, and transported along with samples from many other people. No information about you will be sent or accessible by this repository. Your sample will be used for future research on psychiatric disorders, related medical conditions and/or other health conditions. Access to the repository is strictly limited and all applications will be reviewed by the NIMH review panel. 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.
We certainly want to provide feedback to participants about the study, so we intend to provide all participants with periodic updates of the project's progress and results via email.
Furthermore, when we publish the results from the research, any genes identified in the development, course or treatment of eating disorders will be publicly available in a scientific journal.
The analysis we conduct on a participant’s saliva sample will not tell us about 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 eating disorders from a large group of people.
Should you suspect that you, or a loved one, may be living with an eating disorder, speak to your local healthcare professional without delay, or head to www.insideoutinstitute.org.au to complete their screener and assessment, and to access more information and professional support.
Australian professional patient support services offering 24/7 helpline services include:
- Butterfly National Helpline: 1800 334 67
- Beyond Blue: 1300 22 4636
- LifeLine: 13 11 14
- MensLine Australia: 1300 78 99 78
- Kids Help Line: 1800 55 1800.
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).