Project Status
Work leading up to Endo1000
We are not yet recruiting for participants to the study.
We are currently fundraising to launch the first phase of the project: to set up the methods of data collection (the app and database) and do other work that needs to happen before we start enrolling participants. We aim to start recruiting people to the study in Autumn 2025.
To ensure the ENDO1000 project collects the right kind of data and has the most impact possible, we have been doing a lot of work behind the scenes to prepare for participants:
We have been collecting biological samples from patients with a confirmed diagnosis of endometriosis to gain new insights into how endometriosis lesions form and how they may send signals to and from the central nervous system to cause pain. In the ENDO1000 project, we will ask study participants to collect biological samples at multiple timepoints in their own homes and send them to us so we can study them in our laboratory.
We are using smartwatches to learn more about the impact of symptoms, including pain ‘flares’, on movement and sleep patterns, with data being used to develop new ways to help patients manage their wellbeing. We will be asking all study participants in the ENDO1000 project to wear smartwatches during three specific timepoints during a two year period.
We are working with patients to better understand the impact of diet and nutritional supplements on management of symptoms of endometriosis. As part of the ENDO1000 project, we are developing a special App that study participants will be able to download onto their smartphones so that they can record their diet on a day-to-day basis.
We have been working with international teams to better understand genetic risk factors that may increase risk of endometriosis and also to develop a blood test for endometriosis. In ENDO1000, we will be able to investigate the genetics of study participants by examining the biological samples that they collect in their own home.
All of this work has been vital to inform how we deliver the ENDO1000 project.
Our Events
“We really need to talk about endometriosis”
Read about our panel event in London
On 19 October 2023, Professor Horne joined panellists, Emma Barnett (Broadcaster and Host of Woman’s Hour), Jessica Knappett (Comedian, Writer and Actor), Eleanor Thom (Comedy writer and author of “Private Parts – How To Really Live With Endometriosis”) and Jackie Leiper (MD Pensions, Sharedealing & Distribution, Scottish Widows & CEO Embark Group) for a fascinating and insightful discussion to raise awareness on endometriosis and launch the ENDO1000 project at Scotland House in London.
Professor Horne said after the event “I personally truly appreciated hearing the stories of the panellists and some of the attendees, for me it really helped bring to life how much endometriosis impacts the lives of so many people. I really hope that the ENDO1000 project will allow us to provide endometriosis sufferers with new information to empower them to make and shape decisions about their care.”
