World Endometriosis Research Foundation Endometriosis Phenome and Biobanking Harmonisation Project: I. Surgical phenotype data collection in endometriosis research
Open accessAbstract
OBJECTIVE: To standardize the recording of surgical phenotypic information on endometriosis and related sample collections obtained at laparoscopy, allowing large-scale collaborative research into the condition. DESIGN: An international collaboration involving 34 clinical/academic centers and three industry collaborators from 16 countries. SETTING: Two workshops were conducted in 2013, bringing together 54 clinical, academic, and industry leaders in endometriosis research and management worldwide. PATIENT(S): None. INTERVENTION(S): A postsurgical scoring sheet containing general and gynecological patient and procedural information, extent of disease, the location and type of endometriotic lesion, and any other findings was developed during several rounds of review. Comments and any systematic surgical data collection tools used in the reviewers' centers were incorporated. MAIN OUTCOME MEASURE(S): The development of a standard recommended (SSF) and minimum required (MSF) form to collect data on the surgical phenotype of endometriosis. RESULT(S): SSF and MSF include detailed descriptions of lesions, modes of procedures and sample collection, comorbidities, and potential residual disease at the end of surgery, along with previously published instruments such as the revised American Society for Reproductive Medicine and Endometriosis Fertility Index classification tools for comparison and validation. CONCLUSION(S): This is the first multicenter, international collaboration between academic centers and industry addressing standardization of phenotypic data collection for a specific disease. The Endometriosis Phenome and Biobanking Harmonisation Project SSF and MSF are essential tools to increase our understanding of the pathogenesis of endometriosis by allowing large-scale collaborative research into the condition.
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Recently, the World Endometriosis Research Foundation (WERF) Endometriosis Phenome and Biobanking Harmonisation Project (EPHect) has developed a consensus on standardisation and harmonisation of phenotypic surgical/clinical data and biologic sample collection methods in endometriosis research.
“Recently, the World Endometriosis Research Foundation (WERF) Endometriosis Phenome and Biobanking Harmonisation Project (EPHect) has developed a consensus on standardisation and harmonisation of phenotypic surgical/clinical data and biologic sample collection methods in endometriosis research [146, 147, 149, 150].”
From Update on biomarkers for the detection of endometriosis (2015) · cites this paper as [149]
Variability of patient types included in endometriosis research studies is not solely determined by the surgical characterization of the extent of disease during laparoscopy.
“The variability of patient “types” included in endometriosis research studies is not solely determined by the surgical characterization of the (extent of) disease during laparoscopy (1).”
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- Authors
- Becker, C. M., Laufer, M. R., Stratton, P., Hummelshoj, L., Missmer, S. A., Zondervan, K. T., Adamson, G. D., Adamson, G. D., Allaire, C., Anchan, R., Becker, C. M., Bedaiwy, M. A., Buck Louis, G. M., Calhaz-Jorge, C., Chwalisz, K., D'Hooghe, T. M., Fassbender, A., Faustmann, T., Fazleabas, A. T., Flores, I., Forman, A., Fraser, I., Giudice, L. C., Gotte, M., Gregersen, P., Guo, S.-W., Harada, T., Hartwell, D., Horne, A. W., Hull, M. L., Hummelshoj, L., Ibrahim, M. G., Kiesel, L., Laufer, M. R., Machens, K., Mechsner, S., Missmer, S. A., Montgomery, G. W., Nap, A., Nyegaard, M., Osteen, K. G., Petta, C. A., Rahmioglu, N., Renner, S. P., Riedlinger, J., Roehrich, S., Rogers, P. A., Rombauts, L., Salumets, A., Saridogan, E., Seckin, T., Stratton, P., Sharpe-Timms, K. L., Tworoger, S., Vigano, P., Vincent, K., Vitonis, A. F., Wienhues-Thelen, U.-H., Yeung, P. P., Yong, P., & Zondervan, K. T.
- Affiliations
- University of Oxford (GB)
- Brigham and Women's Hospital (US)
- World Endometriosis Research Foundation (GB)
- John Radcliffe Hospital (GB)
- Harvard University (US)
- Corresponding author
- Becker, Christian M.
- ORCID
- Venue
- Fertility and Sterility
- Publisher
- Elsevier BV
- Published
- 2014-11
- Volume
- 102
- Issue
- 5
- Pages
- 1213-1222
- ISSN
- 0015-0282 (ISSN-L)
- PMC
- PMC4230690
- OpenAlex
- W2026056052
- Cited by
- 206
- References
- 44
- Citations by year
- 2026: 13 · 2025: 22 · 2024: 17 · 2023: 14 · 2022: 22 · 2021: 17 · 2020: 18 · 2019: 17 · 2018: 24 · 2017: 16 · 2016: 15 · 2015: 7 · 2014: 4
- FWCI
- 2.14
- Type
- journal article
- Language
- en
- Update notices
- erratum (2015-10-01)
- Open access
- hybrid
- doi.org
- Locations
- Fertility and Sterility (publishedVersion, cc-by)
- Europe PMC (PubMed Central) (publishedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- Minerva Access (University of Melbourne) (submittedVersion, cc-by)
- Lirias (submittedVersion)
- Funders
- Wellcome Trust (085235, WT085235/Z/08/Z)
- Boston Center for Endometriosis
- J. Willard and Alice S. Marriott Foundation
- National Institute for Health and Care Research (CL-2008-13-002)
- Wellbeing of Women
- Bayer HealthCare
- Ernst Schering Foundation
- National Institutes of Health
- Medical Research Council (MR/K011480/1)
- National Institute of Environmental Health Sciences (R01ES014942)
- National Institute of Child Health and Human Development (HD57210)
- Eunice Kennedy Shriver National Institute of Child Health and Human Development (U54HD055764, R01HD057210, HD008769-11, HD57210, P50HD055764, Z01HD008769)
- Topics
- Health Sciences › Medicine › Reproductive Medicine › Endometriosis Research and Treatment
- Health Sciences › Medicine › Obstetrics and Gynecology › Endometrial and Cervical Cancer Treatments
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ectopic Pregnancy Diagnosis and Management
- Keywords
- endometriosis, phenome, data standardization, laparoscopic surgery, residual disease, comorbidities, Endometriosis Fertility Index, multicenter collaboration
- MeSH terms
- Education, Endometriosis, Female, Humans, Medical History Taking, Phenotype, Surveys and Questionnaires, Registries, Information Storage and Retrieval, Biomedical Research, Internationality
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