World Endometriosis Research Foundation Endometriosis Phenome and Biobanking Harmonisation Project: IV. Tissue collection, processing, and storage in endometriosis research

Abstract

ObjectiveTo harmonize standard operating procedures (SOPs) and standardize the recording of associated data for collection, processing, and storage of human tissues relevant to endometriosis.DesignAn international collaboration involving 34 clinical/academic centers and three industry collaborators from 16 countries on five continents.SettingIn 2013, two workshops were conducted followed by global consultation, bringing together 54 leaders in endometriosis research and sample processing from around the world.Patient(s)None.Intervention(s)Consensus SOPs were based on: 1) systematic comparison of SOPs from 24 global centers collecting tissue samples from women with and without endometriosis on a medium or large scale (publication on >100 cases); 2) literature evidence where available, or consultation with laboratory experts otherwise; and 3) several global consultation rounds.Main Outcome Measure(s)Standard recommended and minimum required SOPs for tissue collection, processing, and storage in endometriosis research.Result(s)We developed “recommended standard” and “minimum required” SOPs for the collection, processing, and storage of ectopic and eutopic endometrium, peritoneum, and myometrium, and a biospecimen data collection form necessary for interpretation of sample-derived results.Conclusion(s)The EPHect SOPs allow endometriosis research centers to decrease variability in tissue-based results, facilitating between-center comparisons and collaborations. The procedures are also relevant to research into other gynecologic conditions involving endometrium, myometrium, and peritoneum. The consensus SOPs are based on the best available evidence; areas with limited evidence are identified as requiring further pilot studies. The SOPs will be reviewed based on investigator feedback and through systematic triannual follow-up. Updated versions will be made available at: http://endometriosisfoundation.org/ephect.

Cancer-Associated Mutations in Endometriosis without Cancer

“…Tissue samples from 15 patients were obtained from the BC Women’s Centre for Pelvic Pain and Endometriosis in Vancouver, BC, Canada, and collected through the OVCARE Tissue Bank (part of the World Endometriosis Research Foundation Endometriosis Phenome and Biobanking Harmonisation Project). 21 The institutional review boards at the respective hospitals approved all tissue collection. Inclusion criteria were pathologist-confirmed deep infiltrating endometriosis (lesions with a depth >5 mm, such as in the bowel or peritoneal wall) containing both epithelial and stromal components, the absence of cancer or dysplasia, and a lesion size sufficient for tissue coring, macrodissection, or laser-capture microdissection.…”

World Endometriosis Society consensus on the classification of endometriosis

“…Collaborative data collection in a manner described in the WERF EPHect papers highlighting the need for harmonisation of the endometriosis phenome (i.e. the set of all phenotypes expressed), data collection, and specimen handling Vitonis et al, 2014;Rahmioglu et al, 2014;Fassbender et al, 2014) is the key to unlock this considerable potential.…”

An evidence‐based approach to assessing surgical versus clinical diagnosis of symptomatic endometriosis

“…Development of biomarkers in the context of endometriosis would be bolstered by well‐designed studies that include biomarkers in conjunction with other clinical diagnostic measures. The World Endometriosis Research Foundation Endometriosis Phenome and Biobanking Harmonisation Project is making progress toward enhanced understanding through global research collaboration …”