Diagnosis times for endometriosis have unfortunately increased and experiences of endometriosis can vary from person to person. As part of the EUmetriosis research, the ENDO1000 project aims to address this by developing personalised treatment approaches for those with endometriosis.
What’s being studied?
ENDO1000 will collect data and biological samples from 1000 people with endometriosis over a two-year period across the UK and Croatia. Participants will use a mobile app alongside a smartwatch that will track physical activity, sleep and daily rhythms, providing an insight into lifestyle factors of those with endometriosis. Data will also be gathered on diet, the gut microbiome, inflammation and hormone levels.
Where is the research at now?
Currently, the focus is on recruiting participants in the UK and Croatia. To date, just over 1500 participants have consented to take part in the study across both countries and sample collection kits have been distributed to participants.
Patient and Public Involvement in ENDO1000
The Patient and Public Involvement (PPI) group for ENDO1000 helped with the design of the project and in testing out the app. This input has been vital to improve and refine the study design and the mobile app. It also provided valuable insight into the challenges of those with endometriosis, ensuring the research is capturing the symptoms that are important to the population which can now be addressed in the research. This highlights the importance of engaging PPI groups in the research process to ensure the full lived experience of the condition is being accurately reflected.
The researchers working with the PPI group shared that:
“Patients have been thanking us for the work that we are doing as they feel grateful that they are finally being seen.”
Why this research matters?
By collecting data on patients over a two-year period, researchers will be able to identify patterns and make meaningful comparisons between individuals. It also allows researchers to better understand the symptoms, their impact on daily life and the impact of surgery, medical treatments and self-management strategies. The researchers hope that the scope of the study will allow for the development of patient-centred treatments and tools to enable those with endometriosis to better manage their condition and improve their quality of life.
You can find out more about the study and information to take part here: https://www.endo1000.com/about-the-project/take-part/