RecruitingOBSERVATIONAL

ENDO1000 - A UK-wide Endometriosis Research Project

This UK-wide research project, ENDO1000, aims to better understand endometriosis, a condition affecting 1 in 10 women where womb-like tissue grows outside the womb, causing severe pain and other issues. Currently, diagnosis is slow, and treatments aren't always effective. The study hopes to find new ways to diagnose and treat endometriosis by collecting lots of information from around 3,000 UK individuals. Participants will use a smartphone app to report symptoms like pain and sleep patterns. A smaller group will also provide biological samples (like blood and saliva) and wear a smartwatch. This will help researchers create a detailed picture of endometriosis, leading to more tailored and effective treatments in the future.

At a glance

Status

Recruiting

Sponsor

University of Edinburgh

Enrolment target

1,000

Start

05 Dec 2025

Estimated completion

31 Dec 2030

Endometriosis

What is this study about?

Endometriosis is a common condition affecting about 1.5 million people in the UK. It happens when tissue similar to the lining of the womb grows outside of it, causing ongoing pain, tiredness, irregular periods, and sometimes difficulty getting pregnant. It can really impact a person's daily life, work, and overall well-being.

Right now, it can take a long time to get diagnosed, sometimes up to 8 years, and the main way to confirm it is through surgery. Existing treatments, like painkillers, surgery, or hormone therapy, don't always work for everyone and can have side effects. This means there's a big need for better ways to diagnose endometriosis earlier and offer more effective, personal treatments that suit each individual.

This study, called ENDO1000, wants to change that. Researchers will gather a lot of information over time from people with endometriosis across the UK. By collecting details about symptoms, treatments, lifestyle, and even biological samples, they hope to unlock new discoveries. The goal is to build a clearer picture of why endometriosis affects people differently and what might trigger symptoms. This understanding could lead to faster diagnoses and more tailored treatments that truly help individuals manage their condition better.

Key takeaways

Focuses on improving endometriosis diagnosis and tailored treatments.
Participation involves using a smartphone app to track symptoms.
Some participants will also provide samples and wear a smartwatch.
Aims to understand why symptoms vary and what causes flare-ups.
Your contribution helps future endometriosis care for many.
You can stop participating at any time.

Who may be eligible?

To join this study, you need to be at least 16 years old and living in the UK. A doctor must have diagnosed you with endometriosis in the last 10 years, whether through an MRI scan, ultrasound, or keyhole surgery (laparoscopy).

You also need to be willing to install and use a special ENDO1000 app on your smartphone, or use a similar web-based version, to report your information regularly.

There are a few reasons why you might not be able to take part. For example, if you are currently pregnant, or if you have certain severe blood clotting disorders or active Hepatitis B/C or HIV (due to rules about handling samples by post).

Could this study suit you?

Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.

Are you 16 years old or older?
Do you live in the UK?
Has a doctor diagnosed you with endometriosis in the last 10 years?
Do you own a smartphone and can use an app regularly?
Are you not currently pregnant, and don't have certain serious health conditions?

Answer every question to see your result.

What does participation involve?

If you decide to take part in this study, you'll be asked to use a special ENDO1000 mobile app on your smartphone or a web version. For an initial period of 24 months, you'll regularly report details about your symptoms, including pain levels, menstrual cycle information, how often you use painkillers, your sleep, exercise, diet, and bowel habits. This will help build a picture of your health over time.

A selected group of about 1,000 participants will be asked to do more. This will involve completing longer questionnaires about your endometriosis history, how it affects your quality of life, and any treatments you've had. This group will also be asked to collect their own biological samples, such as small amounts of blood, urine, saliva, a vaginal swab, and a stool (poo) sample, which you'll send off for analysis. Additionally, you'll be asked to wear a smartwatch, which will silently track things like your body temperature, light exposure, sleep patterns, and how much you move. All this information will help researchers understand your endometriosis symptoms, treatments, and what might cause flare-ups, hopefully leading to more personalised care.

Potential risks and benefits

By taking part, you won't directly receive a new treatment or diagnosis. However, your contribution is incredibly valuable as it will help researchers better understand endometriosis, leading to potential future benefits for others living with the condition. There are very few direct risks; you'll be sharing personal health information through an app, and some participants will collect samples and wear a smartwatch, which should be straightforward. You are free to stop participating at any time without giving a reason, and this will not affect your usual medical care.

Locations (1)

Some site locations are approximate. We're improving this — please verify with the trial team before travelling.

University of Edinburgh
Verified postcode
Edinburgh, United Kingdom· Recruiting

Common questions

What is the main goal of this study?

The goal is to better understand endometriosis to find earlier diagnoses and more effective, personalised treatments for affected individuals.

Do I need to visit a hospital or clinic for this study?

No, most of the study involves using a smartphone app from home. Some participants will also collect their own samples and wear a smartwatch.

Will I get a new treatment if I join this study?

This study is about gathering information, not testing a new treatment, so you won't receive a specific treatment for your endometriosis as part of this research.

Who can join the study?

Anyone aged 16 or over in the UK with a doctor-confirmed diagnosis of endometriosis within the last 10 years, who can use a smartphone app.

What happens to my data and samples?

Your data and samples will be used by researchers to study endometriosis, looking at things like markers, bugs in the gut, or DNA, to help find links to diagnosis or treatment, with your permission.

How to find out more

Ann M Doust, DipN

ann.doust@ed.ac.uk +4478910643488 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.