Take Part

The purpose of the ENDO1000 study is to gather information over time to better understand the symptoms, daily life impact, impact of surgery, medical treatments and self-management strategies, and biological changes associated with endometriosis. By collecting data and biological samples, we hope to enable early diagnosis and develop more effective, personalised treatments for endometriosis.

You are eligible if:

• You are 16 or over
• You have a diagnosis of endometriosis or suspect you have endometriosis
• You have a smartphone to download our app
• Live in the UK or Croatia

We are dedicated to collecting diverse data in our research. This project is open to any women and those assigned female at birth, who have experienced endometriosis. You can find out more about our inclusivity here.

I have had a hysterectomy as part of my endometriosis journey, can I still take part?

• Yes – we still want to know about your experience.

I am going through the menopause or don’t have periods anymore, can I still take part?

• Yes – we still want to know about your experience.

I am using hormones as part of my endometriosis treatment, can I still take part?

• Yes, we are interested in how this effects your endometriosis journey and there is space to track this data on the app, it will be really useful for us!

I am currently pregnant, can I still take part?

• Yes, if you are pregnant you can take part by filling in your symptom trackers, however, you will not be asked to complete biological samples.

I am currently trying to get pregnant, can I still take part?

• You can still take part in the study. If you become pregnant you can still fill in your symptom trackers, however, you will not be asked to complete biological samples.

If I’m taking part in another study can I take part in this one?

• Yes as long as it is non-interventional (this would be things like questionnaires and tissue collection.)
• Make sure to check with the other trial if they are happy for you to participate in this one.

First, we will ask you to download the ENDO1000 App and register with basic personal information.

Within the app:

• You will have the opportunity to watch a short video explaining the study.
• We will ask you to electronically sign a consent form if you are happy to take part.
• We will ask you three questions which will determine which parts of the app are appropriate for you e.g., if you have a confirmed diagnosis of endometriosis or not.
• Once the consent has been signed electronically, you will then gain access to our app

The study is split into different stages.

Everyone will:

• Complete trackers daily to track symptoms like pain and fatigue, exercise patterns, painkiller use, periods and sleep pattern. These should take approximately 5 minutes to complete.

If you complete trackers consistently you may then be asked to:

• Complete questionnaires about your endometriosis journey. This could take up to an hour.
• Take biological samples that you can collect at home (saliva, urine, faeces, vaginal swabs and a small blood sample via a finger prick) and send them back to us – all postage costs is covered. Taking the biological samples will take approximately 15 minutes each time.
• Wear a smartwatch continually for a 6-week period.
• Repeat these steps 3 times over the 12 month period

Although, there may be no direct benefits to you taking part in this study, the results from this study might help to improve the diagnosis time and healthcare of endometriosis patients in the future. Tracking your symptoms will allow you to see data reports and patterns over your journey. If you choose to wear a smartwatch we can also send you the reports, at the end, which will show your sleep and activity while you are wearing this.

• You will take part over 2 years.
• With your consent, your data will be stored for a minimum of five years and may be used in other research.  The data used will only be in anonymised form e.g. you will not be able to be identified in it.  Data may also be shared, again in a way that you cannot be identified, with other researchers.  All data will be stored on secure University severs where only members of the research team can access it.  Data privacy details can be found here.
• All the information we collect during the course of the research will be kept confidential and there are strict laws which safeguard your privacy at every stage.
• When the study is finished, the results will be published in peer-reviewed journals and will be available on the trial website.  You will not be identified in any of the results.