Understanding Endometriosis and Insurance.

Researchers from NICM Health Research Institute and the School of Business at Western Sydney University are interested in finding out about the uptake of, and experiences people with endometriosis are having with life, income protection, permanent disability, trauma and private health insurance. It is uncertain how endometriosis impacts the ability of people with endometriosis to obtain, afford, manage and claim on these insurances.

This information will help us better understand the role that insurance plays in managing the risks and costs associated with endometriosis and how insurance might help patients, their families and the community better manage financial and health related quality of life issues associated with endometriosis management.

Researchers involved

Mr Andrew Proudfoot (MPhil Candidate), Dr Mike Armour and Mr Justin Sinclair (PhD Candidate) of NICM Health Research Institute and Dr Sarah Duffy of the School of Business, Western Sydney University, Australia. This project has been approved by the Western Sydney University Ethics Committee (H15099). No external funding was received for this study.

Eligibility Criteria

This survey is open to people who are current residents of Australia and New Zealand only.

To participate in this survey you need to:
- Have been told by your doctor you have endometriosis.
- Be aged 18 or older

Content of the survey

The survey will ask about your background (such as your age, which country you live in), how your endometriosis was diagnosed, lifestyle and health questions including what symptoms you have and how you manage these, the insurance you have or don't have. Questions about insurers, claiming, medicine usage may be different depending on your answers to prior questions. It might help you answer some of the questions if you have your policy cover / documents or superannuation statement available (as often life and disability insurance information is listed there) but that is not essential.

What participation involves

Participation in the study will involve completing an online survey that will take 15-30 minutes. You will be required to complete the survey in one sitting as we do not use cookies to protect your privacy.

Anonymity

The survey is anonymous and no identifying data such as name, date of birth, address, or email will be requested. We will remove any references to personal information in answers to open-ended questions that might allow someone to guess your identity. We do not collect your IP address or any location data.

Several of the following questions ask for some personal information such as your weight and height. We ask these questions because they are used for assessing insurance risk and to determine whether people with endometriosis may be underinsured or over-insured; high risk or low risk; charged more premiums or less premiums etc. All responses are anonymous, and we would appreciate if you can answer these but understand if you would prefer not to.

What will happen with the results

It is intended that the results of this study will be published in journal articles, reports, and presented at conferences, professional development sessions and other scientific meetings. Reports regarding claims, safety and health effects, using aggregate data, actuarial, advisory and/or underwriting methodologies may also be prepared for specific groups/organisations to help facilitate safe practice, public health and risk management. Raw data collected will be accessible only by members of the research team.

Voluntary participation

Your participation in this study is completely voluntary. Should you wish to withdraw at any stage before you submit your results, you are free to do so. Unfortunately, once you have submitted your results we are unable to remove them as they are anonymous and so we cannot identify which answers are yours.

How to participate

Please read the information sheet for more information (this will open in a new window).If you would like to participate, please indicate that you have read and understood this information by clicking the 'Next' button below. It is important that you complete the survey only once.

Further information: Should you require any further information, or have any concerns, please do not hesitate to contact Dr Mike Armour +61 415363201 or m.armour@westernsydney.edu.au. If you have any complaints or reservations about the ethical conduct of this research, you may contact the Ethics Committee through Research Engagement, Development and Innovation (REDI) on Tel +61 2 4736 0229 or email humanethics@westernsydney.edu.au. Any issues you raise will be treated in confidence and investigated fully, and you will be informed of the outcome.

Call for participants: Chinese Herbal Medicine for Endometriosis – Clinical trial

Researchers from Western Sydney University and the University of New South Wales, led by Dr Mike Armour, are currently running a clinical trial on the effectiveness of a modification of a traditional Chinese medicine formula (Gynoclear) on the symptoms of endometriosis.

This trial is open to women Australia wide and will involve having two blood tests, one at the start and one at the end of the trial, filling in online pain and symptom diaries, and taking six capsules per day for three months.

This is a placebo-controlled trial so there is a 50% chance you will get a placebo or the active treatment, however all women in the placebo group will receive three months’ supply of Gynoclear at the end of the trial.  

To find out more and to take part in our screening checklist go to https://nicm.edu.au/research/clinical_trials/endometriosis_study

Research Participation

Researchers from Flinders University are interested in the impact endometriosis has on body image,

wellbeing, and eating disorder symptoms.

If you are a person with endometriosis, living in Australia, and over the age of 18, you are eligible to

participate.

To volunteer and complete a short questionnaire (15 minutes), please click on the link to read the

participation information sheet and provide consent

This study has been approved by the Flinders University Human Research Ethics Committee (Project Number 5585).

My name is Claire, I am an endometriosis sufferer, and I am currently working on my masters’ dissertation through the University of Stirling. My dissertation is on endometriosis and Instagram (specifically exploring what type of endo-related Instagram accounts endo sufferers follow and how they use them) and I was wondering if you could help me with participant recruitment by spreading word of my study to your network.

The interviews would be about one hour maximum and can be online or in-person (depending on participant location- this is a Scotland-based study). The questions will focus predominantly on their use of Instagram and experiences with endo-related Instagram accounts, not on their experience of the disease itself.

This is study is supervised and adheres to the ethical standards set forth by the University of Stirling. If you have any questions or would like copies of the participant information guide, consent form, or anything else please feel free to reach out to me (cem00091@students.stir.ac.uk)! I’ve also set up an Instagram account for the project (@endostudy2022) which has more information on the project readily available.

Thank you for your time,

Claire Martin

Do you have Pelvic Pain?

This is pain in any of the bones of your pelvis, any of the muscles attached to your pelvis or organs inside your pelvis?

This might be endometriosis, pain with sexual intercourse, coccyx pain from a fall or a traumatic birth, pain with urination or when emptying your bowels.

If you have had this pain for 6 months or longer and are over the age of 18, WE NEED YOUR HELP!

A questionnaire has been developed to help identify the thoughts and feelings that people with pelvic pain have, and to improve this questionnaire we need your feedback!

Please follow the link below to take part in the survey.

Macquarie University researchers are currently conducting a brief survey to understand the experience of symptom invalidation (i.e., the dismissal or rejection of health symptoms by doctors, family or friends) on Australian adults living with chronic physical health conditions.

If you are interested in finding out more about this survey, click: https://redcap.mq.edu.au/surveys/?s=X8JWY4KMC7

Invitation to participate in a research study.

Title: An investigation into mental, physical, and sexual health in those with endometriosis

Letter of Information

Investigators:
Samantha L. Levang, BAH, Department of Psychology, Queen's University
Caroline F. Pukall, PhD, Department of Psychology, Queen's University
Shannon M. Coyle, MA, Department of Psychology, Queen's University

Introduction and Purpose of the Study:
You are being invited to participate in an online research study led by researchers at Queen’s University in Kingston, Ontario, Canada. This study seeks to find out how people who have endometriosis are faring in terms of their physical and mental health, sexual well-being, and quality of life over a 12-month period.

Participation is voluntary and you can decline to participate in the research or any aspect of the research at any time without penalty/loss of benefits.

Eligibility:
In order to participate, you must be 18 years of age or older, be able to read and write fluently in English, be in an intimate and/or romantic relationship, and have a diagnosis of endometriosis. You must also be comfortable answering questions about sexuality, your health (physical and mental), and pain.

Study Procedures:
Your participation in this study is voluntary and you are free to withdraw at any time without any penalty. Should you choose to participate, you will be asked to complete 3 surveys at the following time points outlined below. Should you choose to participate in future time points, you will be asked to consent and confirm at the end of each survey by providing your email address. Your email address will be used to link data over the 3 time points, and downloaded data will be de-identified immediately once linked (meaning your name and personal information will not be attached to your responses; responses will just be identified by a participant number).

The survey contains questionnaires asking about sociodemographic information (e.g., age, education), pain characteristics (e.g., location, intensity), medical history, emotional and cognitive function, sexual function, and relationship satisfaction. Members of the research team will be available by email (sex.lab@queensu.ca) to answer any questions that you may have about the survey and/or the study.

Study time points:

• Time 1 survey (approximately 45-60 minutes)

• Time 2 survey (approximately 45-60 minutes) 6 Months after Time 1

• Time 3 survey (approximately 45-60 minutes) 6 Months after Time 2

Your responses will remain confidential. You can go back to previously completed pages by pressing the Back button (if it appears).

Research findings from this study may be presented at relevant conference organizations (e.g., Canadian Sex Research Forum, Society for Sex Therapy and Research), published in peer-reviewed journals (e.g., Journal of Sexual Medicine, Journal of Sex Research), and/or posted to the Sexual Health Research Laboratory website as a blog (https://www.sexlab.ca/blog) and/or infographic.

Compensation:
To thank you for your time and participation in the study, you will have the opportunity to choose to be entered into a draw to win an Amazon or other e-gift card in Canadian dollars (or equivalent) for each survey time point should you choose to participate.

• Time 1 Survey: Chance to win one of 50 prize draws of $20 e-gift cards.

• Time 2 Survey: Direct compensation of a $10 e-gift card, PLUS a chance to win one of 10 prize draws of $25 e-gift cards.

• Time 3 Survey: Direction compensation of a $20 e-gift card, PLUS a chance to win one of 10 prize draws of $50 e-gift cards.

On completion of the survey at each timepoint, if you wish to enter your email address into the prize draw/confirm email for payment [Time 2, 3], you will be directed to a separate survey to enter this information. If you have chosen not to continue with participation, you can still enter your email address after the debriefing, and it will be stored in a separate survey from your responses until prize draw winners have been selected. Survey responses and prize draw email entries are kept in 2 separate databases to keep your responses separate from your email address.

Advantages of Participating in this Study:
There are no direct benefits of participating in this study. The information in this study may provide us with a more comprehensive understanding of the psychological variables associated with adaptive outcomes in the endometriosis population.

Risks of Participating in this Study:
There are no known physical, economic, or social risks associated with participating in this study. However, some of the questions cover sensitive topics, such as current physical and emotional condition, as well as sexual functioning. Due to the intimate nature of the survey items, you may come across questions or parts of the study that you find too personal, unpleasant to think about, or perhaps objectionable. You may experience psychological or emotional discomfort or distress responding to these questions. However, you are not in any way obligated to answer any material that you find objectionable or that makes you feel uncomfortable; there will be a ‘decline response’ option for each question. You may also withdraw from the study at any time by closing your browser window. Sexuality and mental health resources are also provided in the debriefing form.

Discontinuation of this Study:
You are under no obligation to participate in this study. Furthermore, you may choose to discontinue the study at any time without penalty and you may refuse to answer any of the questions that you are asked without providing an explanation for your refusal to answer. All of the online questions have a ‘decline response’ option that you may choose should you decide that you do not want to provide an answer. Should you wish to withdraw from the study, you can do so at any time by either closing the browser window or selecting ‘decline response’ for the remaining questions. If you discontinue your participation by closing your browser window, you will not have access to the study’s Debriefing Form, nor will you have the option to enter into our prize draw; however, you may still contact the researchers if you wish to have access to the study’s Debriefing Form.
If you wish to withdraw your data from the study, you may only do so if you elected to provide your email address to participate in future time points. Without providing an email, the data is not identifiable. You have 13 months to withdraw data, which is the duration from time 1 to a month after time 3 of participation.

If you would like further information about the study, or have additional questions or concerns, you may contact the study research associate Shannon Coyle directly at sex.lab@queensu.ca or the lead investigators: Dr. Caroline Pukall, at caroline.pukall@queensu.ca, or Samantha Levang, at sex.lab@queensu.ca

If you have any ethics concerns, please contact the General Research Ethics Board (GREB) at 1-844-535-2988 (Toll free in North America) or email chair.GREB@queensu.ca.

Liability:
By clicking “yes, I agree to participate” on this consent form, you do not waive your legal rights nor release any investigator(s) and sponsors from their legal and professional responsibilities.

Confidential Nature of this Study:
All questionnaire information obtained during the course of this study is strictly confidential and your privacy will be protected at all times.

For participants who agree to participating in Times 2, and 3, we will be asking for your consent to link your surveys at the different timepoints via your email address. If you consent to this linking of data, you will provide your email address at the end of the current survey and your data will be saved in a password-protected database on our secure and password-protected servers. Your email address will be used to link your responses for each timepoint you consent to participant in. Only the people directly involved in the study and named on this form will have access to this document. Once all of your data have been linked, your email address will be securely removed and deleted from the document. No other identifying information will be collected or linked to your questionnaire responses.

If you provide your email address to be contacted for future studies, this will not be linked to the data you provide in the current survey. Your email address (should you choose to provide it for compensation and/or future research) will be saved in a separate, secure database from your survey responses.

Questionnaires will be administered through Queen's University's new Enterprise Software System, Qualtrics. Data collected by Qualtrics at Queen's University will be stored in their data center in Toronto, Canada and backup data in our Amazon Web Service (AWS) which is located in Montreal, Canada. Participants will receive email reminders and may complete the questionnaires in a location and on a device of their choosing.

Your responses to the questionnaires (without any identifying information) will be downloaded from Qualtrics and stored on encrypted and password-protected hard drives (Synology) stored in the Sexual Health Research Laboratory at Queen’s University Campus. You will not be identified in any publication or reports of the study; data will be combined in all reports of this study. The de-identified electronic data will be maintained indefinitely to allow the investigators to answer future research questions with archived data. Electronic data files will not contain any identifying information (e.g., name, contact info, etc.).

Data collected from the study will be analyzed in aggregate form (in other words, all together), and will be communicated via publication in journal articles, presentations, and through the Queen’s Health Research Lab’s website (www.sexlab.ca). No personally identifying details will be included in the dissemination of the results.

The Queen’s General Research Ethics Board (GREB) may request access to study data to ensure that the researcher(s) have or are meeting their ethical obligations in conducting this research. GREB is bound by confidentiality and will not disclose any personal information.

Your participation in this study is completely voluntary. You may withdraw from this study at any time without any consequence by simply exiting the survey. You have not waived any legal rights by consenting to participate in this study. You may retain a copy of this Letter of Information, for your own records, by clicking [here].

Introduction
My name is Sophia Gerontakos and as part of my PhD research at Southern Cross University (SCU) I am working with Professor Jon Wardle and Associate Professor Matthew Leach both from SCU and Dr Amie Steel from University of Technology Sydney.

What is this research about?
The aim of this research is to examine the feasibility of a group consultation model (adapted Shared Medical Appointment (SMA) model where a health practitioner consults with multiple patients in a group setting) for delivering naturopathic care to people with endometriosis, with an additional view to examining the ability of the intervention to meet unmet healthcare needs of people with endometriosis. NatME is designed as a pilot feasibility intervention trial that will take a naturopathic approach to management of endometriosis in combination with group care.
 

If I say yes, what will it involve?
If you wish to participate we ask you to sign the consent form and return it to the researcher Sophia Gerontakos who will contact you to arrange a time to conduct a brief intake phone call to discuss what is involved in participation in the study and answer any questions you have. Once you have consented to participate we will ask you to commit to a 12 week program with 5-9 other participants where you will receive naturopathic care, health advice and (optional) bespoke naturopathic prescriptions over the course of the program.

What are the risks associated with this research?
There may be some health topics and discussions that make you feel embarrassed or uncomfortable. You are not obligated to share any health (or other) information you are not comfortable to and at the beginning of each group session you will complete a brief intake form that will ask if you require a short (5 minute) private consultation with the practitioner that will be scheduled by the group facilitator if you respond yes. If any of the discussions make you feel uncomfortable or cause distress you are free to take a break from the group for as long as you require or withdraw from the research completely by telling the facilitator (at any time during the group) you would like to withdraw from the research.

My responsibilities to you
Your privacy and confidentiality will be fully protected. All participants will agree verbally and in writing to a confidentiality agreement and ground rules for the group will be set in the beginning of the program.

COVID-19 safety
The COVID-19 pandemic is a fluid and ever-evolving situation. At this stage we have face-to-face groups planned to commence approx. April 2022 in Brisbane and Gold Coast QLD, and in Northern NSW, as well as one online cohort for participants from other areas. In the event that we cannot proceed in-person, the groups will be held on a virtual platform. For in-person groups, we will be adhering to SCU and state mandated COVID safe plans which may include check-in using the NSW or QLD QR codes or providing your contact details to the facilitator, physical distancing of 1.5m between each person, and masks. You will be notified before each group visit of the COVID-19 requirements.

Inquiries
If you have any inquiries regarding this research please contact the researcher Sophia Gerontakos
Email: s.gerontakos.10@student.scu.edu.au
M: 0424 465 919

Ethics Approval
This research has been approved by the Human Research Ethics Committee at Southern Cross University. The approval number is 2021/117.

RECRUITMENT FOR

RESEARCH STUDY:

TRANSGENDER AND

NON-BINARY

PEOPLE’S

EXPERIENCE OF

LIVING WITH

ENDOMETRIOSIS

We are looking for transgender and non-

binary people who are living with

endometriosis to take part in a research study.

- Do you identify as transgender and / or as

non-binary?

- Have you been diagnosed or have

suspected endometriosis?

- Are you eighteen years or older?

Volunteers can come from anywhere in the

world and must be able to speak English.

If you are interested in being a participant or

wanting to learn more, please contact Cheryl

Eder

Researcher: Cheryl Eder

cje@live.co.za

Supervisor: Dr Rizwana Roomaney

We are currently recruiting menstrual app developers, researchers, health professionals and advocates, to give their perspective on what is important to understand about menstrual apps and medical information. This study has been approved by the Otago University Human Ethics Committee, Reference Number D21/418.

To participate, please read the information below and then click through to the short online survey. This survey also has a separate page where you will be invited to provide your contact details if you’re interested in participating in a 90-minute online focus group.

INFORMATION  FOR  PARTICIPANTS

Thank you for showing an interest in this project.  Please read this information sheet carefully before deciding whether or not to participate.  If you decide to participate, we thank you.  If you decide not to take part, there will be no disadvantage to you and we thank you for considering our request.

What is the Aim of the Project?

This research aims to understand how menstrual tracking apps offer medical information to their users. We want to uncover the risks of inaccuracy and unsuitability to unlock the potential for increasing equity in reproductive healthcare. The end goal of the overarching project is to develop practical guidelines and tools for using menstrual and reproductive health technologies to meet the wellbeing needs of Aotearoa New Zealand. The research is supported by a 2021 Health Delivery Research Activation Grant from the Health Research Council.

In this first step, our goal is to develop relationships with stakeholders. The aim of this step is to identify key priorities that need to be considered by app users, healthcare professionals, and app developers, including positives and potential advantages, as well as concerns and potential disadvantages

What Types of Participants are being sought?

We are seeking to involve groups, organisations, and individuals with an interest in menstrual apps, health technology, and/or menstrual health and wellbeing. Everyone aged 18 years and over who is interested is welcome to participate.

What will Participants be asked to do?

 Should you agree to take part in this project, you will be asked to

• Read this information sheet and give your consent

• Fill out a brief online survey

And, if you are interested,

• Participate in a 90-minute focus group to discuss ideas with up to 10 participants plus researchers/facilitators. This group session will be held online using Zoom.

• If you would prefer, you may request an individual interview with one of the research team.

The focus group or interview will involve discussion around a series of open-ended questions. The general line of discussion will include opportunities and concerns about menstrual tracking apps and the health information they provide. The precise nature of the discussion will depend on the way in which the focus group develops.  Consequently, although the School of Social Sciences is aware of the general areas to be explored in the interview, the Committee has not been able to review the precise questions to be used. In the event that the line of questioning develops in such a way that you feel hesitant or uncomfortable, you are reminded of your right to decline to answer any particular question(s).

The focus group will also include making online wordclouds and word lists on the website Slido (https://www.sli.do/). Anonymous, live responses will be shared with the focus group. You are not required to participate and any responses are optional.

What Data or Information will be collected and what use will be made of it?

We will be collecting your written responses to the online survey, and if you participate in the focus groups, we will be recording the group discussion and keeping copies of material produced by the groups, such as comments on Zoom and word lists produced in Slido. If you express an interest in further contact, we will keep your contact information as well.

The data collected will be securely stored in such a way that only the primary researchers and research assistants on this project will be able to gain access to it. Data obtained as a result of the research will be retained for at least 10 years in secure storage. Any personal information such audio or video recordings will be destroyed at the completion of the research even though the data derived from the research will, in most cases, be kept for much longer or possibly indefinitely. Your contact information will only be retained if you have requested to be on the list for receiving updates.

Information from the surveys and focus groups will be compiled and anonymised for use in setting priorities for the next stage of research. No material that could personally identify you will be used in any reports on this study. The results of this research may be published on the project website and in academic articles. Contact information will be used to keep you informed about the project and to invite you to any future opportunities for participation and feedback. You are free to withdraw your contact information at any time.

Can Participants change their mind and withdraw from the project?

Please be aware that you may decide not to take part in the project or any part of the project without any disadvantage to yourself. You may ask for specific responses to be removed from the survey and/or focus group transcripts, although individuals will not be able to be removed from focus group recordings once the focus groups have taken place. You may withdraw your contact information at any time.

What if Participants have any Questions?

If you have any questions about our project, either now or in the future, please feel free to contact:

Associate Professor Bryndl Hohmann-Marriott

School of Social Sciences

University of Otago

Bryndl.hohmann-marriott@otago.ac.nz

This study has been approved by the School stated above. However, if you have any concerns about the ethical conduct of the research you may contact the University of Otago Human Ethics Committee through the Human Ethics Committee Administrator (ph +643 479 8256 or email gary.witte@otago.ac.nz). Any issues you raise will be treated in confidence and investigated and you will be informed of the outcome.

Mechanisms of and Novel Treatments for Visceral Pain in Endometriosis

About this Research Topic

The underlying causes of chronic pelvic pain (CPP) associated with endometriosis are poorly understood, with the majority of the research focused on endometriotic lesions and their inflammatory environment. Paradoxically, pain symptoms and severity have been found to poorly correlate with lesion characteristics. This disconnect is further highlighted by the observation that endometriosis patients frequently suffer from several clinical comorbidities, suggesting a more complex pathophysiology for endometriosis-related CPP that cannot be explained by endometriotic lesions alone.

The first step in the pain pathway is the sensory neurons that project from peripheral tissues to the central nervous system. How sensory neurons detect/transmit pain from pelvic organs, affected by endometriosis, is unknown, providing a limiting factor for developing treatments for endometriosis-related CPP.

To fill this gap in knowledge, the objective of the research topic proposed is to request manuscripts that:

- Examine changes in the peripheral and central sensory neural pathways occurring in endometriosis.

- Explore novel approaches to relieve endometriosis-related CPP.

- Investigate cross organ sensitization mechanisms in preclinical models of endometriosis and humans were possible.

Keywords: Endometriosis, Chronic Pelvic Pain, Peripheral Sensory Remodelling, Central Sensory Remodeling, Visceral Organ Cross-Talk

Important Note: All contributions to this Research Topic must be within the scope of the section and journal to which they are submitted, as defined in their mission statements. Frontiers reserves the right to guide an out-of-scope manuscript to a more suitable section or journal at any stage of peer review.

Consumer Engagement Survey

Health Translation Queensland is a partnership organisation that brings together 11 of Queensland’s major medical research institutes and health care providers. We help to solve some of Queensland’s most pressing health challenges by supporting well evidenced research to be more quickly and efficiently translated into clinical practice.

Health Translation Queensland is seeking to understand how to best support consumer engagement in research. We invite you to complete this short survey by sharing your experience as a health consumer.

The survey is 12 questions in total and we suggest allocating 5-10 minutes of your time to complete the questions.

All responses are confidential and will help to inform future opportunities for health consumers.

If you require assistance in completing this form please contact us.

It's Women's Health Week, a Jean Hailes for Women's Health initiative centred on improving the health and wellbeing of women and girls worldwide.

This week is a great reminder for women and girls to set aside time to prioritise their physical and mental health.

In honour of this important week, MCRI is launching the Long STEPPP Australia Study, a project looking at how periods, period and pelvic pain, and/or endometriosis, affects young people’s lives.

Most young people who have periods will experience some period pain. For some, it is manageable and will not change normal day to day activities. For others, the pain they experience will stop them from doing everyday activities; this could mean missing school, work, sporting, and social activities.

We believe that periods shouldn't ruin your life.

We are asking young people, aged 12-18 years old, whose periods started at least 3 months ago to take part in our project. You will be asked to complete one anonymous survey that will take 20-30 minutes of your time.

You can access more information and the survey by clicking here: