--- title: "Surgical phenotype data collection in endometriosis research | Sutter Health" description: "First multicenter, international collaboration between academic centers and industry addressing standardization of phenotypic data collection for a disease." url: "https://www.sutterhealth.org/research/publications/surgical-phenotype-data-endometriosis-research-1055312881" --- 1. [Home](https://www.sutterhealth.org/) / 2. [Research](https://www.sutterhealth.org/research) / 3. [Research publications](https://www.sutterhealth.org/research/publications) / 4. Surgical phenotype data collection in endometriosis research # World Endometriosis Research Foundation Endometriosis Phenome and Biobanking Harmonisation Project: I. Surgical phenotype data collection in endometriosis research. Becker CM, Laufer MR, Stratton P, Hummelshoj L, Missmer SA, Zondervan KT, & Adamson GD; WERF EPHect Working Group. _Fertil Steril. 102(5):1213-22. doi: 10.1016/j.fertnstert.2014.07.709. Epub 2014 Aug 20._ 2014-11-01 ## Abstract 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. [PubMed abstract](http://www.ncbi.nlm.nih.gov/pubmed/25150390) ## Research topics - [Disease Management](https://www.sutterhealth.org/research-search-results?query=%22%5C%22Disease+Management%5C%22%22) - [Medical Informatics](https://www.sutterhealth.org/research-search-results?query=%22%5C%22Medical+Informatics%5C%22%22) - [Obstetrics and Gynecology](https://www.sutterhealth.org/research-search-results?query=%22%5C%22Obstetrics+and+Gynecology%5C%22%22) - [Women's Health](https://www.sutterhealth.org/research-search-results?query=%22%5C%22Women%27s+Health%5C%22%22) ## Related publications [View all publications](https://www.sutterhealth.org/research-search-results?verticalKey=research_publication) - Publication ### [An open letter to the Food and Drug Administration regarding the use of morcellation procedures in women having surgery for presumed uterine myomas.](https://www.sutterhealth.org/research/publications/to-fda-re-morcellation-uterine-myomas-1055312488) Parker W, Berek JS, Pritts E, et al. J Minim Invasive Gynecol. pii: S1553-4650(15)01732-X. doi: 10.1016/j.jmig.2015.12.012. \[Epub ahead of print\] 2016 Jan 08 - Publication ### [Selective serotonin reuptake inhibitors for premenstrual syndrome and premenstrual dysphoric disorder: a meta-analysis.](https://www.sutterhealth.org/research/publications/ssris-for-premenstrual-syndrome-meta-analysis-1055312627) Shah NR, Jones JB, Aperi J, Shemtov R, Karne A, Borenstein J. Obstet Gynecol. 111(5):1175-82. doi: 10.1097/AOG.0b013e31816fd73b. 2008 May 01 - Publication ### [An evidence-based approach to assessing surgical versus clinical diagnosis of symptomatic endometriosis.](https://www.sutterhealth.org/research/publications/surgical-vs-clinical-dx-of-endometriosis-1055312364) Taylor HS, Adamson GD, Diamond MP, Goldstein SR, Horne AW, Missmer SA, Snabes MC, Surrey E, Taylor RN. Int J Gynaecol Obstet. 2018 May 5. doi: 10.1002/ijgo.12521. \[Epub ahead of print\] Review. 2018 May 05 - Publication ### [The International Glossary on Infertility and Fertility Care, 2017.](https://www.sutterhealth.org/research/publications/internatl-glossary-infertility-fertility-care-1055312335) Zegers-Hochschild F, Adamson GD, Dyer S, Racowsky C, de Mouzon J, Sokol R, Rienzi L, Sunde A, Schmidt L, Cooke ID, Simpson JL, van der Poel S. Fertil Steril. pii: S0015-0282(17)30429-6. doi: 10.1016/j.fertnstert.2017.06.005. \[Epub ahead of print\] 2017 Jul 28 - Publication ### [World Endometriosis Society consensus on the classification of endometriosis.](https://www.sutterhealth.org/research/publications/world-endometriosis-society-endometriosis-classif-1055312517) Johnson NP, Hummelshoj L, Adamson GD, Keckstein J, Taylor HS, Abrao MS, Bush D, Kiesel L, Tamimi R, Sharpe-Timms KL, Rombauts L, Giudice LC; for the World Endometriosis Society Sao Paulo Consortium. Hum Reprod. \[Epub ahead of print\] 2016 Dec 05 [View all publications](https://www.sutterhealth.org/research-search-results?verticalKey=research_publication) ```json {"@context":"https://schema.org","@type":"MedicalOrganization","name":"Sutter Health","@id":"https://www.sutterhealth.org/#medicalorganization","url":"https://www.sutterhealth.org","logo":"https://www.sutterhealth.org/static/images/sutter-health-logo.svg","address":{"@type":"PostalAddress","streetAddress":"2200 River Plaza Drive","addressLocality":"Sacramento","addressRegion":"CA","postalCode":"95833","addressCountry":"US"},"areaServed":{"@type":"AdministrativeArea","name":"California"},"sameAs":["https://www.facebook.com/SutterHealth","https://www.instagram.com/sutterhealth/","https://x.com/SutterHealth","https://www.youtube.com/sutterhealth","https://www.linkedin.com/company/sutter-health","https://en.wikipedia.org/wiki/Sutter_Health"]} ``` ```json {"@context":"https://schema.org","@type":"BreadcrumbList","@id":"https://www.sutterhealth.org/research/publications/surgical-phenotype-data-endometriosis-research-1055312881#breadcrumblist","itemListElement":[{"@type":"ListItem","position":1,"name":"Home","item":"https://www.sutterhealth.org/"},{"@type":"ListItem","position":2,"name":"Research","item":"https://www.sutterhealth.org/research"},{"@type":"ListItem","position":3,"name":"Research publications","item":"https://www.sutterhealth.org/research/publications"},{"@type":"ListItem","position":4,"name":"Surgical phenotype data collection in endometriosis research"}]} ``` ```json {"@context":"https://schema.org","@type":"MedicalScholarlyArticle","@id":"https://www.sutterhealth.org/research/publications/surgical-phenotype-data-endometriosis-research-1055312881#medicalscholarlyarticle","name":"World Endometriosis Research Foundation Endometriosis Phenome and Biobanking Harmonisation Project: I. Surgical phenotype data collection in endometriosis research.","headline":"Surgical phenotype data collection in endometriosis research","abstract":"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. 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