World Endometriosis Research Foundation Endometriosis Phenome and Biobanking Harmonisation Project: I. Surgical phenotype data collection in endometriosis research

Abstract

ObjectiveTo standardize the recording of surgical phenotypic information on endometriosis and related sample collections obtained at laparoscopy, allowing large-scale collaborative research into the condition.DesignAn international collaboration involving 34 clinical/academic centers and three industry collaborators from 16 countries.SettingTwo 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.

Hormonal Add-Back Therapy for Females Treated With Gonadotropin-Releasing Hormone Agonist for Endometriosis

“…Eligible females were aged 15 to 22 years, at least 2 years post-menarche, and had surgically-confirmed endometriosis diagnosed on the basis of visual inspection 14 , with the clinical decision made to initiate treatment with leuprolide acetate depot (Lupron Depot 11.25 mg IM) every 3 months. Patients were excluded for other medical diagnoses (e.g., celiac disease, diabetes mellitus) or medications (eg, glucocorticoids) known to affect BMD.…”

Nerve Bundles and Deep Dyspareunia in Endometriosis

“…11,12 This zone II corresponds to zone III in the classification of the World Endometriosis Research Foundation for the Endometriosis Phenome and Biobanking Harmonization Project. 22 We divided the zone II posterior compartment into 3 parts: (a) central zone II (central cul-de-sac); (b) right zone II (right uterosacral with the adjacent right cul-de-sac; and (c) left zone II (left uterosacral with the adjacent left cul-de-sac). To test our hypothesis, we refined the sample by selecting participants who fit one of the 3 stringently phenotyped groups: a study group and 2 control groups ( Table 1).…”

Protocol for developing, disseminating and implementing a core outcome set for endometriosis

“…The Art and Science of Endometriosis meeting, convened by the National Institutes of Health, has published recommendations regarding the standardisation of research design in several areas including entry criteria and outcome measures for pain symptoms 4. The World Endometriosis Research Foundation Endometriosis Phenome and Biobanking Harmonization Project (WERF EPHect) has published tools for the standardisation of research design in several areas including clinical, covariate and surgical phenotype recording and specimen collection, processing and storage 5–8. Their work continues, involving global participants from a range of stakeholder groups including healthcare professionals, researchers, industry representatives and women with endometriosis, reflecting the enthusiasm of our specialty to work together to improve research design and clinical care.…”