Project Title: Sensory-cognitive changes in endometriosis

Principal Researcher
Dr Andrew Flood
University of Canberra Faculty of Health
Email: Andrew.Flood@canberra.edu.au

Research Team
 Advance Pain Science
 University of Canberra Faculty of Health
 Email: APSresearch@canberra.edu.au

Project Aims

 1. Examine whether interoception differs between those with confirmed endometriosis and those without endometriosis;

 2. Examine whether pain-related cognition differs between those with confirmed endometriosis and those without endometriosis;

 3. Examine whether future oriented thought differs between those with confirmed endometriosis and those without endometriosis.

General Outline of the Project
This research project will collect data via an online survey to better understand the sensory and cognitive aspects of endometriosis. We aim to extend on previous research that has shown that individuals with chronic pain conditions, including endometriosis-related pain, may experience bodily sensations differently and may think about pain differently. Those with chronic pain may also impact on how people think about the future. Understanding whether these sensory and cognitive differences exist in those diagnosed with endometriosis may offer new insights into the condition and potentially open new avenues for treatment.

Participant Involvement
If you agree to participate in the research, you will be asked to:

 1. Complete a series of questionnaires that ask about your endometriosis diagnosis, pelvic pain, interoception, episodic future thinking, pain cognition, physical activity, physical literacy and exercise experience. Expect the questionnaire to take approximately 40 minutes to complete.

 2. At the completion of the questionnaire, you may choose to provide contact details for further research participation or to receive a summary of our findings. Participation in the research is completely voluntary and participants may, without any penalty, decline to take part or withdraw at any time without providing an explanation or refuse to answer a question.

To participate in this study, you must not meet any of the following exclusion criteria:

 • Biological male.
 • Have had a partial or complete hysterectomy.
 • Currently pregnant or trying to conceive.
 • Currently breastfeeding.
 • Menopausal.
 • Have suspected endometriosis not confirmed through surgery or medical imaging. 
 • Aged below 18 years.
 • Currently reside outside of Australia.

Benefits of Participation
The Australian National Action Plan for Endometriosis highlights the need for more research into the characteristics of the condition. Specifically, little is known about the sensory and cognitive characteristics of endometriosis. Increased understanding of associated sensory and cognitive elements may pave the way for future endometriosis interventions.

Risks of Participation
Participating in this study involves a minor risk of discomfort or harm. The questionnaires require you to consider your mental and physical health status as well as current physical activity levels, which may evoke past issues or insecurities and increase discomfort. You have the option to leave the survey at any time. Support service contacts will be provided at the beginning and end of the survey in case of distress. Additionally, you can contact the research team listed above if you have any questions or concerns about the study.

Head to Health: 1800 595 212
Access Mental Health Canberra: 1800 629 354
NSW Mental Health Line: 1800 011 511
Beyond Blue: 1300 22 4636
Lifeline: 13 11 14 OR Text 0477 131 114

Confidentiality
Only the researchers will have access to the individual information provided by participants. Privacy and confidentiality will be assured at all times. The research outcomes may be presented at conferences and written up for publication. However, in all these publications, the privacy and confidentiality of individuals will be protected.

Anonymity
All reports and publications of the research will contain no information that can identify any individual and all information will be kept in the strictest confidence. Data Storage The information collected will be stored securely on a password protected computer throughout the project and then stored at the University of Canberra for the required five-year period after which it will be destroyed according to university protocols.

Ethics Committee Clearance
The project has been approved by the Human Research Ethics Committee of the University of Canberra (HREC –13953).

Queries and Concerns
Queries or concerns regarding the research can be directed to the researchers. Contact details are at the top of this form. If you have any complaints or reservations about the ethical conduct of this research, you may contact the University of Canberra’s Research Ethics & Integrity Unit team via telephone 02 6206 3916 or email humanethicscommittee@canberra.edu.au or researchethicsandintegrity@canberra.edu.au.
If you would like some guidance on the questions you could ask about your participation please refer to the Participants’ Guide located at https://www.canberra.edu.au/research/graduate-research/current-research- students/integrity-and-ethics/ethics/accordion/human-ethics/human-ethics-documents/Agreeing-to-participate- in-research.pdf 


Consent statement 
I have read and understood the information about the research. I am not aware of any condition that would prevent my participation, and I agree to participate in this project. I have had the opportunity to ask questions about my participation in the research. All the questions I have asked, have been answered to my satisfaction.