Harmonization of clinical and laboratory data to improve biomarker discovery in endometriosis: WERF EPHect

Endometriosis is a heterogeneous condition in terms of surgical characterization of the disease and nonsurgical symptomatic and non-symptomatic characteristics of the woman. Many centers across the world conduct research into endometriosis independently from each other, using different standard operating protocols (SOPs ) for collection of biological samples and different questionnaires for capturing clinical and surgical phenotypes. The aim of the World Endometriosis Research Foundation (WERF) Endometriosis Phenome and Biobanking Harmonisation Project (EPHect) is to standardize globally the collection of samples and phenotypes across centers, allowing for more effective large-scale international collaborative research of the condition. To achieve this goal, two workshops were conducted in 2013, bringing together 54 clinical, academic, and industry leaders in endometriosis research from 16 countries. SOPs and questionnaires from the contributing centers were systematically compared, and available literature evidence, along with consultation from laboratory experts, was taken into consideration to reach consensus SOPs and questionnaires. After several global revisions, two-level standard recommended and minimum required (1) forms for collection of surgical phenotypes; (2) questionnaire for collection of clinical phenotypes; (3) SOPs for blood, saliva, urine, endometrial/peritoneal fluid, menstrual effluent; and (4) SOPs for ectopic and eutopic endometrium, peritoneum, and myometrium were published. These instruments will be updated regularly based on feedback from investigators, and current versions are available through http://endometriosisfoundation.org/ephect.