Priorities for Endometriosis Research: Recommendations From an International Consensus Workshop
Open accessAbstract
Endometriosis is an estrogen-dependent disorder where endometrial tissue forms lesions outside the uterus. Endometriosis affects an estimated 10% of women in the reproductive-age group, rising to 30% to 50% in patients with infertility and/or pain, with significant impact on their physical, mental, and social well-being. There is no known cure, and most current medical treatments are not suitable long term due to their side-effect profiles. Endometriosis has an estimated annual cost in the United States of $18.8 to $22 billion (2002 figures). Although endometriosis was first described more than 100 years ago, current knowledge of its pathogenesis, spontaneous evolution, and the pathophysiology of the related infertility and pelvic pain, remain unclear. A consensus workshop was convened following the 10th World Congress on Endometriosis to establish recommendations for priorities in endometriosis research. One major issue identified as impacting on the capacity to undertake endometriosis research is the need for multidisciplinary expertise. A total of 25 recommendations for research have been developed, grouped under 5 subheadings: (1) diagnosis, (2) classification and prognosis, (3) treatment and outcome, (4) epidemiology, and (5) pathophysiology. Endometriosis research is underfunded relative to other diseases with high health care burdens. This may be due to the practical difficulties of developing competitive research proposals on a complex and poorly understood disease, which affects only women. By producing this consensus international research priorities statement it is the hope of the workshop participants that researchers will be encouraged to develop new interdisciplinary research proposals that will attract increased funding support for work on endometriosis.
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There is consensus in the World Endometriosis Society that development of a reliable noninvasive test is one of the top research priorities in endometriosis.
“Although there is consensus in the World Endometriosis Society that the development of a reliable noninvasive test is one of the top research priorities in endometriosis [11, 21]”
From Update on biomarkers for the detection of endometriosis (2015) · cites this paper as [21]
Some areas of endometriosis research have progressed more rapidly than others since the 2008 research directions workshop.
“Within the main body of recommendations, some areas of research appear to have progressed more rapidly than others since the last research directions workshop in 2008. 1”
From Defining Future Directions for Endometriosis Research: Workshop Report From the 2011 World Congress of Endometriosis in Montpellier, France (2013) · cites this paper as [1]
The WERF EPHect initiative is a direct answer to the key priority of phenome data collection and SOP harmonization identified in Endometriosis Research Directions workshops held in 2008 and 2011.
“It also is a direct answer to the key priority of phenome data collection and SOP harmonization identified in Endometriosis Research Directions workshops held in 2008 (12) and 2011 (2)”
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- Authors
- Rogers, P. A. W., D’Hooghe, T. M., Fazleabas, A., Gargett, C. E., Giudice, L. C., Montgomery, G. W., Rombauts, L., Salamonsen, L. A., & Zondervan, K. T.
- Affiliations
- Monash University (AU)
- KU Leuven (BE)
- University of Illinois Chicago (US)
- University of California, San Francisco (US)
- QIMR Berghofer Medical Research Institute (AU)
- Centre for Human Genetics (GB)
- Corresponding author
- Rogers, Peter A. W.
- ORCID
- Venue
- Reproductive Sciences
- Published
- 2009-04
- Volume
- 16
- Issue
- 4
- Pages
- 335-346
- ISSN
- 1933-7191 (ISSN-L)
- 1933-7205
- PMC
- PMC3682634
- OpenAlex
- W2166050085
- Cited by
- 346
- References
- 65
- Citations by year
- 2026: 8 · 2025: 10 · 2024: 21 · 2023: 22 · 2022: 26 · 2021: 30 · 2020: 23 · 2019: 23 · 2018: 15 · 2017: 23 · 2016: 28 · 2015: 20 · 2014: 20 · 2013: 15 · 2012: 22
- FWCI
- 24.42
- Type
- journal article
- Language
- en
- Open access
- green
- europepmc.org
- Licence
- Locations
- Reproductive Sciences (publishedVersion)
- Europe PMC (PubMed Central) (publishedVersion, cc-by-nc)
- PubMed Central (publishedVersion, cc-by-nc)
- PubMed (publishedVersion)
- Minerva Access (University of Melbourne) (submittedVersion, cc-by-nc)
- eScholarship (California Digital Library) (submittedVersion)
- eScholarship (California Digital Library) (submittedVersion, cc-by-nc)
- Funders
- Pfizer
- Wellcome Trust (085235)
- Monash University
- Fonds Wetenschappelijk Onderzoek
- National Institutes of Health
- Medical Research Council
- National Health and Medical Research Council (388901, 334063)
- Eunice Kennedy Shriver National Institute of Child Health and Human Development (U54HD055764)
- Topics
- Health Sciences › Medicine › Reproductive Medicine › Endometriosis Research and Treatment
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ectopic Pregnancy Diagnosis and Management
- Health Sciences › Medicine › Obstetrics and Gynecology › Gynecological conditions and treatments
- Keywords
- endometriosis, research priorities, research funding, infertility, pelvic pain, endometriosis diagnosis, endometriosis classification, prognosis, treatment outcomes, pathophysiology, multidisciplinary research, estrogen-dependent disease
- MeSH terms
- Animals, Consensus Development Conferences as Topic, Consensus Statements as Topic, Diagnostic Imaging, Disease Models, Animal, Endometriosis, Endometrium, Environment, Female, Health Priorities, Humans, Infertility, Female, Ovarian Neoplasms, Prognosis, Research, Research Support as Topic, Risk Factors, Sensitivity and Specificity, Biomarkers, Treatment Outcome, Pelvic Pain, Genetic Predisposition to Disease
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