The World Endometriosis Research Foundation (WERF) EndoCost Study is the first ever prospective study to assess the direct and indirect cost of endometriosis to society and to women with the disease.

The aim of the EndoCost study is to calculate the costs of endometriosis from a societal perspective. For this purpose, a prospective, prevalence-based cost-of-illness study was set up to collect cost data in 12 centres across 10 countries, where 909 women with endometriosis were recruited.

The EndoCost study calculated the level of endometriosis costs, elicited the most important drivers of endometriosis costs, and identified factors that influence the level of endometriosis costs, through specifically developed, and validated, questionnaires.

This approach was combined with a retrospective assessment of endometriosis-related cost and endometriosis-related impact on quality of life in all participating women.

The study protocol was published in early 2011:  Simoens S, et al. Endometriosis cost assessment (the EndoCost study): a cost-of-illness study protocol. Gynecol Obstet Invest 2011;71(3):170-6

Preliminary data from the prospective study was presented by Thomas D’Hooghe as a poster at the 26th Annual Meeting of ESHRE in June 2010, and quality of life data was presented by Aisha de Graaff as an accepted main oral presentation at the 11th World Congress on Endometriosis in September 2011.

The main paper was published in March 2012: Simoens S, et al. The burden of endometriosis: costs and quality of life of women with endometriosis and treated in referral centres. Hum Reprod 2012 [Epub ahead of print] 

→ Key findings from the WERF EndoCost Study

The EndoCost Study is coordinated through the University of Leuven where the principcal investigators are Professor Thomas D’Hooghe (gynaecology) and Professor Steven Simoens (health economy).

The EndoCost Consortium

The EndoCost Consortium consists of: Leuven University (Belgium); Glostrup Hospital (Denmark); CHU de Clermont Ferrand (France); KEZ-Berlin (Germany); Medizinische Hochshule Hannover (Germany); Semelweis University (Hungary); University of Milano (Italy); University of Bern (Switzerland); University of Edinburgh (United Kingdom); The Cleveland Clinic (USA); University of Wisconsin-Madison (USA); University of Maastricht (The Netherlands).

Funding

The EndoCost Study has been made possible through grants from Bayer Schering Pharma, Takeda Italia Farmaceutici SpA, Pfizer Ltd, and the European Society of Human Reproduction and Embryology (ESHRE).