Journal of Endometriosis 2010 ; 2 ( 1 ): 3- 6
Editorial review
Creating solutions in endometriosis: global collaboration through the World Endometriosis Research Foundation G. David Adamson, Stephen Kennedy, Lone Hummelshoj World Endometriosis Research Foundation (WERF), London - England1 and Palo Alto (CA) - USA2 Registered charity number 1116775 2 Registered 501(c)3 non profit organisation
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ABSTRACT: Endometriosis affects an estimated 176 million women worldwide during the prime years of their lives. Yet many clinical questions remain unanswered, treatment failures are common, and there is little investment in investigating disease mechanisms. The World Endometriosis Research Foundation (WERF) has been created to provide a global platform where resources and intelligence are pooled to enable international collaboration in order to find answers so that treatments for endometriosis can be improved and prevention can become reality in future generations of women. WERF is now working with 30 centres in 19 countries conducting prospective studies investigating the impact of endometriosis, disease predictability, and personal and societal cost. (Journal of Endometriosis 2010; 2: 3-6) Key words: Endometriosis, Clinical trials, Basic research, Global collaboration, Fundraising
INTRODUCTION Endometriosis affects an estimated 1 in 10 women during their reproductive years (1). According to the World Bank it is projected that in 2010 there are 1,761,687,000 women in the world aged between 15 and 49 (2). If 10% of these have endometriosis, it equates to more than 176 million women throughout the world during the prime years of their lives. Yet, only a fraction of these will ever have been diagnosed and treated. The disease is defined as the presence of endometriallike tissue outside the uterus, which induces a chronic, inflammatory reaction. The associated pain, infertility and pelvic masses can impact on general physical, mental and social well-being, and symptoms may persist despite seemingly adequate medical and/or surgical treatment of the disease (3). However, we see relatively little investment in finding treatments for endometriosis. Consequently, treatment fai-
lures are common. Furthermore, many clinical questions remain unanswered because of a lack of large-scale, multi-centre, clinical trials with sufficient patient numbers to provide results with statistical significance. This primarily occurs because researchers tend to perform small, isolated projects, often with limited local funding, resulting in even well-designed studies producing no definitive results and/or answers (Fig. 1). In fact, a common conclusion seen in papers relating to endometriosis is: while these results are encouraging, a larger prospective trial, which is adequately powered, is required to test this hypothesis properly. It has become evident that highly coordinated efforts are necessary to conduct the large, prospective, adequately powered trials that are required to answer important clinical questions. Thus, at the 9th World Congress on Endometriosis in Maastricht in September 2005, a meeting was held for interested parties to “brainstorm” potential solutions to this challenge.
© 2010 Wichtig Editore - ISSN 2035-9969
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Global collaboration in endometriosis
Fig. 1 - Traditional fundraising model.
Fig. 2 - The future of fundraising.
Creating solutions to a problem Twenty-eight people convened in Maastricht, representing both the medical and the consumer communities. As a result of this meeting a working group, representing all sta4
keholders, was established to move this initiative forward with a proposal for a global solution. The solution was to create the World Endometriosis Research Foundation (WERF) as the first global research charity in the field of endometriosis. WERF was registered in July 2006, and
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the initiative was, and is, supported by the American Society for Reproductive Medicine (ASRM), the European Society of Human Reproduction and Embryology (ESHRE), and the World Endometriosis Society (WES). The Society for Gynecological Investigation (SGI) has since lent its support as well. By creating a global platform, it has now become possible to pool resources and work together across borders to achieve statistically meaningful results (Fig. 2).
WERF’s mission The mission of the World Endometriosis Research Foundation is to provide a global platform which fosters research into endometriosis to improve knowledge and treatment(s). WERF will do so by: • facilitating and carrying out large-scale, international, multi-centre trials; • supporting specific research projects investigating disease mechanisms. The goal is to ensure that: • collaborative research is carried out among international centres; • datasets are shared; • encouraging results lead to further research; • strict protocols are enforced to ensure research is high quality; • results can be translated into viable treatments. The ultimate vision is a day when no woman is crippled by endometriosis or prevented from having children because of the disease.
The Global Study of Women’s Health (GSWH) GSWH is the first, prospective epidemiological study to investigate the impact of, and risk-factors for, endometriosis in 16 centres in 10 countries. GSWH has recruited women aged 18 to 45 undergoing laparoscopy across centers in Africa, Europe, North America, South America, and Asia. These women were asked to complete a questionnaire either on paper or online in their own language prior to their surgery. Those found not to have endometriosis at laparoscopy acted as controls. By using standardized data collection in centres across the world and across diverse health care settings, we are gaining insight into the global impact of endometriosis at both a personal and societal level (4).
The Women’s Health Symptoms Study (WHSS) WHSS is the first prospective epidemiological study, at a global level, to investigate the potential of a symptombased questionnaire to predict the diagnosis of endometriosis. The WHSS has prospectively recruited women aged 18 to 45 having a first laparoscopy across centres in Africa, Europe, North America, South America, and Asia. The women were asked to complete a questionnaire either on paper or online in their own language prior to their surgery. Those found not to have endometriosis at laparoscopy act as controls. Using standardized data collection in centres across the world and across diverse health care settings will maximize the opportunity to develop a validated, symptombased, diagnostic tool (4). A study of this scale, involving to date 1,884 women from 19 centres in 13 countries, has never been undertaken before.
EndoCost Delivering answers In a world where benign (female) diseases are not typically prioritized, the challenge remains to justify investment for research into the pathogenesis of, and improved treatments for, endometriosis. Thus, justification for funding needs to be developed, and WERF took on this challenge as its first priority by raising funding for, and conducting, three prospective studies that had never been undertaken in the field of endometriosis on such a large scale.
The aim of the EndoCost study is to calculate the costs of endometriosis from a societal perspective; again, a study like this has never before been undertaken in the field of endometriosis. A prospective, prevalence-based cost-ofillness study has been initiated to collect cost data. This approach has been combined with a retrospective assessment of endometriosis-related cost and impact on quality of life in all participating women. The study, which involves 12 centres in ten countries, will calculate the level of endometriosis costs, elicit the most 5
Global collaboration in endometriosis
important drivers of endometriosis costs, and identify factors that influence the level of endometriosis costs through specifically developed and validated questionnaires. 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.
WERF is committed to providing the global platform for this collaboration. WERF wants to work with those who wish to contribute to finding solutions for the more than 176 million women whose lives can be compromised by this disease. Our chances for success will be dramatically increased if we pool our resources and intelligence, and work together.
Moving the field of endometriosis forward
ACKNOWLEDGMENTS
In just over three years, WERF has established itself as a global platform working with 30 centres in 19 countries, funding and delivering results from the first ever prospective studies investigating disease impact, predictability, and cost. This has never before been achieved in the field of endometriosis! Results from these three studies are due to be published during the first half of 2010 and WERF is committed to build on these achievements. WERF not only wishes to continue to undertake, and raise funds for, clinical trials which may provide answers to current treatment conundrums, it also wishes to create and grow a research fund to investigate disease mechanisms, the ultimate goal being the prevention of endometriosis in future generations of women. This ultimate goal can only become reality, however, if everyone who is passionate about finding answers to the enigma that is endometriosis chooses to work together.
The GSWH has been made possible through a grant from Bayer Schering Pharma AG. The WHSS has been made possible through a grant from TAP Pharmaceutical Products Inc (now Abbott Endocrine Inc). EndoCost has been made possible through grants from Bayer Schering Pharma AG, Takeda Italia Farmaceutici SpA, Pfizer Ltd, and the European Society of Human Reproduction and Embryology (ESHRE). Conflict of interest statement The authors have no conflicts to declare relating to this article.
Address for correspondence: World Endometriosis Research Foundation (WERF) 89 Southgate Road London N1 3JS England - UK www.endometriosisfoundation.org
[email protected]
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Rogers PAW, D’Hooghe TM, Fazleabas A, et al. Priorities for Endometriosis Research: Recommendations From an International Consensus Workshop. Reprod Sci 2009; 16: 335-46. World Bank. Population Projection Tables by Country and Group. Available at: http://go.worldbank.org/KZHE1CQFA0. Accessed 16 February 2010.
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Kennedy S, Bergqvist A, Chapron C, et al. ESHRE guideline on the diagnosis and treatment of endometriosis. Human Reprod 2005; 20: 2698-2704. Nnoaham KE, Sivananthan S, Hummelshoj L, et al. Multicenter studies of the global impact of endometriosis and the predictive value associated symptoms. Journal of Endometriosis 2009; 1:36-45.
