World Endometriosis Research Foundation Endometriosis Phenome and biobanking harmonization project: II. Clinical and covariate phenotype data collection in endometriosis research

Abstract

Objective To harmonize the collection of nonsurgical clinical and epidemiologic data relevant to endometriosis research, allowing large-scale collaboration. Design An international collaboration involving 34 clinical/academic centers and three industry collaborators from 16 countries on five continents. Setting In 2013, two workshops followed by global consultation, bringing together 54 leaders in endometriosis research. Patients None. Intervention(s) Development of a self-administered endometriosis patient questionnaire (EPQ), based on [1] systematic comparison of questionnaires from eight centers that collect data from endometriosis cases (and controls/comparison women) on a medium to large scale (publication on >100 cases); [2] literature evidence; and [3] several global consultation rounds. Main Outcome Measure(s) Standard recommended and minimum required questionnaires to capture detailed clinical and covariate data. Result(s) The standard recommended (EPHect EPQ-S) and minimum required (EPHect EPQ-M) questionnaires contain questions on pelvic pain, subfertility and menstrual/reproductive history, hormone/medication use, medical history, and personal information. Conclusion(s) The EPQ captures the basic set of patient characteristics and exposures considered by the WERF EPHect Working Group to be most critical for the advancement of endometriosis research, but is also relevant to other female conditions with similar risk factors and/or symptomatology. The instruments will be reviewed based on feedback from investigators, and–after a first review after 1 year–triannually through systematic follow-up surveys. Updated versions will be made available through http://endometriosisfoundation.org/ephect.

World Endometriosis Society consensus on the classification of endometriosis

“…Formerly, there were no guidelines to standardize even the way in which information is obtained when diagnostic laparoscopy is performed. We now have such standardization available and the World Endometriosis Research Foundation Endometriosis Phenome and Biobanking Harmonisation Project (WERF EPHect) tools Vitonis et al, 2014) are expected to transform uniquely the surgical and clinical data collection for women with endometriosis. Third, there is an imperative for the development of an 'empirical' classification system for circumstances in which laparoscopic surgery is not undertaken.…”

“…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.…”

Research Priorities for Endometriosis: Recommendations From a Global Consortium of Investigators in Endometriosis

“…The link between pain and pathology has only been possible because of the use of standardized measures of pain intensity. 4 12. Recommendation (updated): Studies on the peritoneum should be encouraged and used to complement those on endometriosis lesions.…”

EPHect – the Endometriosis Phenome (and Biobanking) Harmonisation Project – may be very helpful for clinicians and the women they are treating

“…This consensus was reached after two workshops in 2013 covering all four topics (surgical phenotype; 1 clinical and covariate phenotype; 2 fluid biospecimen collection, processing and storage; 3 tissue collection, processing and storage 4 ) with 54 leaders in endometriosis research, sampling and management worldwide.…”