Participation in the Eating Disorders Genetics Initiative
Any New Zealander aged 16 years and over who has been diagnosed with anorexia nervosa, bulimia nervosa or binge-eating disorder.
Participating in this study could make a genuine contribution to improved understanding of the diagnosis, management and treatment of eating disorders.
Each eligible NZ participant will receive a NZ$30 gift card.
What is the process of the Eating Disorders Genetic Initiative study?
Study participation involves providing informed consent and completing an online survey which should take between 40-60 minutes.
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 NZ Privacy Act 1993, and research information will be de-identified before being sent overseas for analysis.
EDGI researchers will extract DNA from saliva samples to identify specific genes associated with eating disorders.
A full description of sample and data storage is given in the patient information sheet and consent form.
In summary, information you provide via the surveys and your genetic data will be de-identified and stored indefinitely in the National Institutes of Health (NIH) data repository called the database of Genotypes and Phenotypes (dbGaP), at the National Center for Biotechnology Information (NCBI) in Bethesda, Maryland, USA.
Your DNA sample will be stored at the Rutgers University Cell and DNA Repository (rucdr.org). For EDGI participants, this storage period will be for 10 years beyond the end of the study.
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.
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.
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.
If you require further support, New Zealand support agencies include:
- Healthpoint (24 hours) – Call or text 1737 or visit their website https://www.healthpoint.co.nz/mental-health-addictions/mental-health-addictions/1737-need-to-talk/
- Lifeline (24 hours) – Call 0800 543 354
- Youthline - Free phone - 0800 37 66 33 for 24/7 support, free text - 234 between 8am and midnight, email - firstname.lastname@example.org
- EDANZ - 0800 2 EDANZ or 09 522 2679
- Your general practitioner, who also has access to referral pathways if you need more ongoing support
- Crisis teams at your local District Health Board - https://www.health.govt.nz/your-health/services-and-support/health-care-services/mental-health-services/crisis-assessment-teams