16th World Congress on Endometriosis

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Endometriosis Phenome and Biobanking Harmonisation Project


The purpose of the Endometriosis Phenome and Biobanking Harmonisation Project (EPHect) is to enable large-scale, cross-centre, epidemiologically robust research into the causes of endometriosis, novel diagnostic methods, and better treatments, through the development of:

  1. Standardised detailed clinical and personal phenotyping (phenome) data to be collected from women with endometriosis and controls, to improve patient and disease characterisation;
  2. Standard Operating Procedures (SOPs) for banking of biological samples from those with endometriosis and controls, with respect to collection, transport, processing, and long-term storage.

The EPHect collaboration, originally involving 34 academic institutions and three medical/diagnostic companies, is a landmark in endometriosis research worldwide. Its global consensus of standardised data collection instruments and sample collection protocols were published in 2014.

The tools are designed to facilitate the design and interpretation of collaborative studies across the entire endometriosis research field, including studies into its pathogenesis and identification of disease sub-types; biomarker and targeted treatment discovery; and assessment of treatment outcome/effectiveness in clinical trials. To date 60 institutions in 24 countries are registered as users of the tools.

This website portal includes up-to-date information on the EPHect tools and SOPs, and provides the opportunity for feedback (much welcomed!) and external submission of new/amended protocols allowing for the application of novel technologies.

In addition, this website includes a registry of centres using EPHect tools.

Based on user feedback, as well as further systematic searches, these tools will be reviewed every three years and updated where necessary.

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