University of Edinburgh researchers are driving an ambitious, UK-wide research project to better understand endometriosis and find new ways of predicting the best treatments for this prevalent, debilitating, yet under-studied condition. Endometriosis is a reproductive health issue that affects one in ten women and people assigned female at birth (AFAB) in the UK. This painful condition, where womb-like tissue grows outside of the womb, can have a devastating effect on sufferers’ lives, impacting their ability to participate in daily and social activities, their physical and sexual functioning, relationships, educational/work productivity, mental health and general quality of life. Research gap Despite its prevalence and the destruction it wreaks on the lives of an estimated 200 million women and people AFAB worldwide, the cause of endometriosis is still unknown and there is currently no cure. A lack of funding and interest in the disease has meant that our knowledge trails years behind that of other chronic conditions such as heart disease, asthma and diabetes. Diagnosing endometriosis takes an average of eight years from the initial GP visit, and treatment still involves trial and error, often taking a blunt approach of hormones and/or surgery to remove the endometriosis. Professor Andrew Horne Time for change Vital research is needed to accelerate our understanding of endometriosis, and there is no one better qualified to lead the charge than the University of Edinburgh’s Andrew Horne, Professor of Gynaecology and Reproductive Sciences and Director of the Centre for Reproductive Health. Professor Horne is also President-elect of the World Endometriosis Society, Specialty Advisor to Scotland’s Chief Medical Officer for Obstetrics and Gynaecology, and Co-Editor in Chief of the journal Reproduction and Fertility. Together with a team at the Centre for Reproductive Health within the Institute of Regeneration and Repair, Professor Horne has co-created the ENDO1000 project, which seeks to gather data and biological samples from 1,000 endometriosis sufferers and use it to inform much-needed research into the development of personalised care for people with the condition. AI for good Professor Horne and the ENDO1000 team will be using AI and machine learning to aid in the analysis of the data and samples collected and subsequent research. Wearable tech will allow for data on participants’ movements, temperature changes and sleep patterns to be collected over a two-year period without interrupting daily life. Participants will be supported to collect biological samples at home, which will allow the ENDO1000 team to test for information about genes (the ‘genome’), the gut (the ‘microbiome’) and the body’s metabolism (the ‘metabolome’). These insights will be combined during data processing with information on symptoms, treatments, surgeries, diet and exercise patterns that participants will record themselves using specially designed apps. Thanasis Tsanas, Professor of Digital Health and Data Science at the Usher Institute and the ENDO1000 Lead for digital health, is developing algorithms that mean AI can filter the huge amount of data collected at great speed and identify the patterns waiting to be discovered within it. The resulting resource will allow the team to conduct essential research into the causes of endometriosis, and the development of personalised care for people with the condition. The ENDO1000 project has received funding from Horizon Research and Innovation Actions (RIA), under the EU’s Horizon Europe programme to recruit the first 250 participants, but the project relies on donations to continue its work. EI has helped the team secure small amounts of industry support, including philanthropic donations. With sufficient funding, ENDO1000 has the potential to transform the lives of millions. Feeling inspired? Take the next step with Engage - Our online learning programme focuses on the ‘how to’ of external engagement and a practical first step in collaborating with external organisations.Sign up to our Unlocking Innovation newsletter - Be inspired by our innovators, discover the support and resources available to you and celebrate the latest innovation success stories.Explore the Innovation Careers Hub - The University's one-stop shop for all researchers interested in an innovative career.Contact us - If you have an idea and want to drive innovation from your research, meet the team ready to support you on your innovation journey. This article was published on 2025-07-16
