The World Endometriosis Research Foundation (WERF) has commenced 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 has been set up to collect cost data in 12 centres across 10 countries.

A study like this has never before been undertaken in the field of endometriosis.

EndoCost will calculate the level of endometriosis costs, elicit the most important drivers of endometriosis costs, and identify factors that influence the level of endometriosis costs, through specifically developed, and validated, questionnaires.

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

The hypothesis is that results from this study will be fundamental in justifying significant investment in endometriosis research due to the socio-economic aspect of the disease alone.

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

The EndoCost Consortium commenced the study on 31 August 2009 and it ran until the end of the year. Results were analysed through 2010 and it is expected that the first manuscript will be in publication by the end of 2011.

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