EUmetriosis: Transforming endometriosis care in Europe: an integrated approach to enhance understanding, diagnosis, tailored management and patient empowerment

Despite its high prevalence (10% of women and those assigned female at birth; 200 million worldwide) and huge patient and socioeconomic burden (30 billion annually on sick leave in the EU), endometriosis is one of the least researched and most underfunded diseases.

Decades of indifference and neglect, gaps in our understanding of its aetiology and diagnosis, inadequate therapeutic approaches to pain and infertility, and relatively high uptake of unproven self-management strategies characterise the disease. Using a multipronged approach, our project aims to address critical unmet clinical needs around endometriosis.

With involvement of patient organisations and patients with diverse real-life experiences across Europe, we will explore how patients perceive self-management in the light of existing stigma and dismissal in clinical interactions.

We will conduct a randomised controlled trial to evaluate the effectiveness of dietary intervention and cognitive behavioural therapy on endometriosis-related pain and subfertility, aiming at developing new treatment options and practical tools.

Analysing steroid metabolomics and microRNA profiling will provide a powerful diagnostic approach able to predict the effectiveness of interventions and likelihood of recurrence, while investigating the link between microbiota health, local epigenetic alterations, immune response and endometriosis development will yield a better understanding of disease mechanisms.

Utilising eHealth-based technologies and AI/machine learning, we will also develop models that can predict responses to lifestyle behaviours.

Project outcomes will empower affected patients to make and shape decisions for their own health, educate the general public about endometriosis and its heavy burden, and reduce stigmatisation, encouraging more individuals to seek help.