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Frequently asked questions

Endometriosis is a common disease where tissue similar to the lining of the uterus grows outside on other organs causing scarring and pain. Endometriosis may cause painful periods, heavy periods, pain during sex and when going to the toilet. Some women are so severely affected by the disease they struggle emotionally and physically with their everyday lives.

Very little is known about what causes endometriosis and who might be most at risk of developing the disease. A person’s genes, their family history, and their health and experiences during childhood and adolescence might tell us a lot about who is most likely to get endometriosis. The Genetic variants, Early Life exposures, and Longitudinal Endometriosis symptoms Study (GELLES) is planning to look at a person’s genes and health across their life. We want to find out more about why endometriosis develops so that women can be diagnosed earlier and have better treatments.

Women who have a Medicare card, who are born 1989-95, and can speak English can take part in the focus groups/interviews. If you are not female or born 1989-95, and cannot speak English, unfortunately, you can’t participate.
At this stage, women already participating in the Australian Longitudinal Study on Women’s Health are no eligible to participate.

If you’re willing to take part, you’ll be asked to fill in a survey that asks questions such as your year of birth, your parent’s health and your health and wellbeing as a child, teenager and adult. The survey asks detailed questions about your relationships with family members. You will also be asked detailed questions about health including your menstrual periods and any symptoms you might experience during your cycle. You won’t need to include your name or any other identifying details on this survey. You will then be asked to participate in a focus group or interview (depending on your preference) at a later date for approximately 30 to 60 minutes. It will be conducted by video conference or phone (depending on your preference) and will be recorded for analysis by the researchers and their staff. Before you start the survey and the focus group/interview, you’ll be asked to read and sign a consent form. During the focus group/interview, you’ll be asked your opinion of the health survey, ideas about how to improve the health survey and if we have missed anything important.

Participation in this research is entirely your choice. Only women who give their informed consent will be included in the project.  Whether or not you decide to participate, your decision will not disadvantage you. If you do decide to participate, you can withdraw at any time without giving a reason, by contacting the researchers (g.mishra@sph.uq.edu.au).

There won’t be any direct benefit to the women participating in the study. Your contributions will help us develop a survey to discover more about the possible causes of endometriosis. This is important because health care professionals need ways to diagnose the disease earlier and improve treatment for women. You will be required to share your health information collected from the survey with researchers. However, you won’t need to share any of the information about your own health or health experiences in the focus group discussion, just ideas about how we can improve the survey and how we might do this. There’s a small risk that you may find some of the survey questions uncomfortable to answer and you could feel uncomfortable discussing a survey on women’s health. If you start to feel upset or uncomfortable at any time, you can choose to end the survey or leave the focus group discussion, or speak with the researcher after the focus group/interview has ended. You might also like to discuss your feelings with someone at Lifeline (phone 13 11 14) or 1800 Respect (phone 1800 737 732). You don’t need to respond to every question during the focus group/interview.

The focus group/interview will be recorded, and the recording will be changed into a word-for-word written document, called a transcript. Any information that might identify you or another participant will be removed from the transcript (e.g. instead of names, participants will be given codes). You can request to edit the transcript of the discussion, and to withdraw any comments you made, up until your personal details are removed from the file.

Any identifying information will be kept separately from the information you provide during the survey and the focus group, so that it can’t be linked back to you. Only members of the research team (including research assistants and the data management team) will have access to data that identifies you, unless:

  • you have consented otherwise; or
  • we are required by law to release this information to comply with our regulatory obligations.

An external organisation may be employed to transcribe the focus group/interview discussions. The chosen organisation will be bound by strict internal confidentiality policies to protect any identifying details shared throughout the discussion.

 

If you take part in a focus group discussion with other participants, we ask that you maintain the confidentiality of the group by not communicating the specific content to outside parties. All participants taking part in a focus group are encouraged not to use personal identifiers such as names when contributing to the discussion, however, these and any other identifiers will be removed during the transcription process and replaced with a code. Once the analysis is complete, the recordings will be deleted.

 

Survey data and focus group transcripts will be stored securely for a minimum of 5 years from completion of the research and managed/stored in accordance with the University’s Research Data Management Policies and Procedures (see https://ppl.app.uq.edu.au/content/4.20.06-research-data-management) or any successor Guideline (as amended from time to time).

The data collected in the survey and discussion will be used to inform the research team about how to improve the survey. The findings of the survey and direct quotes from the focus group discussion may be reported in publications such as papers in scientific journals and conference presentations. Individual participants will not be identified in any reports arising from the project.

 

If you would like to receive a summary of the results of the discussions, please provide us with your contact details in the space provided at the bottom of the consent form.

Please read this Information Statement and make sure you understand it before you consent to participate. If there’s anything you don’t understand, or if you have questions, contact Reshika Chand (email i.rowlands@uq.edu.au or call 07 3365 5598)

 

If you would like to participate, please register your interest and a study team member will contact you.

If you have any complaints about this project and would prefer to discuss these with an independent person, you should feel free to contact  the University of Queensland’s Ethics Coordinator on +617 3365 3924 / +617 3443 1656 or email humanethics@research.uq.edu.au. This project is covered by the University of Queensland Medical Research Ethics Committee (numbers to be included following ethics approval).