The purpose of the livED project is to establish and maintain an ongoing online database collecting my experiences to improve understanding of the lived and living experiences of people with eating disorder symptomatology. I will be asked to complete a brief battery of standardised measures every 6 months and I can elect to submit additional data via my choice of response types (e.g., journal entries, voice recordings converted to text, short open responses, images) about past and current experiences as often as I choose to.
The livED project will be conducted as described in the Participant Information Statement (PIS), which I have read, and I understand the information provided to me about the study I am participating in.
I have been given the opportunity to ask questions prior to consenting, and these have been answered to my satisfaction (if relevant).
In the PIS I have received a written explanation about the risks and benefits of participating in this study to a level of detail I am satisfied with.
I understand that being in this study is completely voluntary and I do not have to take part, and that my decision to participate will not impact my relationship with the research team or anyone else at the InsideOut Institute for Eating Disorders, the University of Sydney, Sydney Local Health District, or NSW Health, now or in the future.
I understand that my confidentiality will be protected at all times, that my personal details will be retained securely at the University of Sydney as per Research Data Management guidelines and my responses will be stored separately to my personal details and will be de-identified. All identifying information will be removed before the data prior to analysis.
Only named investigators and other data custodians responsible for my linked datasets (as approved by USyd HREC) who are given specific authorisation will be able to access my personal details for the purpose of data linkage (with Consent Level 2) and/or project upkeep and maintenance. In very rare circumstances, there may be a legislative requirement to re-identify data for a participant’s name and contact details to be provided for an ethics or government body. The HREC will be informed of this request prior to actioning other than in the case of an emergency.
This is a longitudinal survey and the data that I enter over time will be analysed both at the single timepoint (cross-sectionally) and across multiple timepoints (longitudinally).
My de-identified data may be used in future research that has been HREC approved with a waiver of consent.
The results of this research may be published in reports, articles or journals, used in conferences and other presentations, or published in academic journals, and that these outputs will not contain my name or any identifiable information about me without my explicit written consent.
My participation in the study is completely voluntary, I can cease or withdraw my participation in the study at any time and I do not have to provide a reason for my withdrawal. I can choose to withdraw data already submitted via written request to the research team unless the data is being analysed or the de-identified group data has been included in research outputs.
I understand that if I pass away before the end of the study, my survey data and health and other records will continue to be used for this research unless my estate provides a written request for data withdrawal pending restrictions Statement 11.
I can elect to receive information about other research opportunities as noted in my consent. This is optional and my choice will not impact my overall participation in the livED project.
I understand that after I consent, this form will be retained by the research team, and that I may request a copy at any time.
I agree to participate in the study and I give my consent freely.