EPHect background

The Endometriosis Phenome and Biobanking Harmonisation Project (EPHect) came about as a result of the frustration of not being able to compare data between investigators because the way it was collected was not comparable. This limited the ability to compare data widely. 

In 2013 and group of endometriosis investigators came together to develop standardised ways in which to collect clinical and surgical data, and to agree upon standard operation procedures (SOPs) on how to collect biospecimens. This initiative allows for international collaboration in the knowledge that data and biospecimens can be compared because these are collected in the same way.

EPHect Stage I (2013 - 2014)

The core working group amalgamated and compared data collection instruments and SOPs from endometriosis research centres, as well as from systematic literature and website searches, through several global consultation rounds and a two-day workshop in March 2013, to:

  • define the endometriosis phenome (including but not limited to surgical visualisation definitions, symptomatology and patient outcomes, demographics, family history, body habitus, diagnostic and treatment history, reproductive history, and other relevant exposure history);
  • identify differences in sample acquisition, processing, and long-term storage procedures utilised across the globe;
  • agree on longitudinal tracking, follow-up, and collection procedures;
  • agree on evidence-based recommended SOPs, or – where evidence is lacking – the need for further analytical work to enable recommendation. In other words, if key differences among SOPs are identified, and there is no available evidence to determine whether these differences matter, a pilot experiment may need to be developed to investigate this – the results of which would inform the final SOP.

Draft SOPs/questionnaires were sent for consultation to a large network of endometriosis research centres (the EPHect Working Group) for comment, suggestions, and feedback. This feedback was amalgamated into final drafts discussed at a second workshop on 11 July 2013 in London.

Consensus SOPs, questionnaires, and forms were published in September 2014.

Results from Stage I of EPHect were presented as a keynote lecture at the 12th World Congress on Endometriosis (Sao Paulo, Brazil).

WERF EPHect Stage I was made possible by grants from Bayer Healthcare, AbbVie, and Roche Diagnostics.

EPHect Stage II (2015 - 2024)

Stage II, which is ongoing, includes:

  • translation of the EPHect tools into numerous languages (currently ongoing);
  • development of electronic tools to assist with the collection of data; the EPQ and SSF are now available in REDcap (contact us for more details);
  • updating the tools based on feedback received: these updates are expected to be published in 3Q 2024;
  • development of additional tools, including SOPs for the physical examination of endometriosis-related pain, experimental models, and the use of imaging in endometriosis.

Results from Stage II of EPHect were presented as a keynote lecture at the 14th World Congress on Endometriosis.

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