Work leading up to the Endo1000 project
In 2017, the EXPPECT team in Edinburgh reported the results of a two-year consultation with patients and health care practitioners that identified the ‘top 10’ priorities for research and improvements in care.
The research by the EXPPECT team in Edinburgh has been focused on addressing many of the ‘Top 10’ priorities:
1. We have used samples from patients and laboratory methods 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.
2. We have identified new non-hormonal medical treatments with less side effects and are conducting clinical trials in selected groups of patients.
3. We are conducting a clinical trial to determine which patients with endometriosis get most benefit from surgery to remove the lesions.
4. We are using wearable technology 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.
5. We are working with patients to better understand the impact of diet and nutritional supplements on management of symptoms of endometriosis.
6. 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.
Although we have made great progress in the last 10 years, we believe our mission to reduce diagnostic delay and develop personalised treatment approaches for individuals with endometriosis can only be achieved if we learn from gathering and studying data and biological samples from patients over an extended period of time.