Endometriosis epidemiology in France
Project coordinator: Marina Kvaskoff
Inserm
Endometriosis, adenomyosis, gynecological health, cohort studies, environment, chronic diseases, epidemiology, genetics, heterogeneity, incidence, infertility, natural history, prevalence, progression, quality of life, risk factors
Endometriosis is a chronic inflammatory disease that affects around 10% of women between first menstruation and menopause, causing severe pelvic pain and constituting one of the main causes of infertility in women.
Despite its high frequency and significant impact on women’s lives, epidemiological knowledge of the disease remains limited due to a variety of factors, including a lack of precise data on its prevalence, incidence and etiology.
One component of the PEPR will be devoted to the launch of a targeted project on the epidemiology of endometriosis in France called EPI-ENDO. This project is based on proposals put forward as part of the National Strategy to Combat Endometriosis, and draws on 6 population-based prospective cohorts:
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- 3 in children: ELFE, PELAGIE, EDEN
- 3 in adults: CONSTANCES, E3N-Générations, NutriNet-Santé
Main objectives:
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- Collect accurate data on endometriosis and its symptoms from six large prospective French cohorts, in children and adults, with a validated diagnosis and information on lesion characteristics.
- To describe the prevalence and incidence of the disease and its symptoms, as well as the prevalence of undiagnosed endometriosis in France.
- Explore the associations between different environmental factors (perinatal exposures, diet, pollution, etc.) and the risk of endometriosis and its symptoms at different ages.
- Identify genetic factors associated with the risk of endometriosis and its symptoms in adulthood.
The data generated on disease characteristics as part of the project, combined with data collected in these cohorts over several decades, will make it possible to study the epidemiology of endometriosis throughout the lifespan. Ultimately, this research should make it possible to identify groups at risk of endometriosis, develop preventive approaches and improve management of the disease through more personalized medicine. The data collected over several years will lead to the world’s largest ever epidemiological study of endometriosis.