The EPHect Patient Questionnaire (EPQ) was developed through broad representation of those who collect epidemiolocial and genetic data in endometriosis research.
Its aim is to collect sufficient data to truly understand the behaviour of endometriosis and its comorbidities. To achieve this, all data must be collected in the same way, and the EPQ has been created to aid with this:
The EPQ is available in REDCap (in English and Hispanic). Please contact us if you require assistance using the EPQ.
Arabic, Assamese, Chinese, Danish, Dutch/Flemish, English, Farsi, French, German, Hindi, Hispanic, Italian, Kannada, Malayalam, Marathi, Portuguese, Spanish, and Turkish. If you are interested in obtaining the EPQ in any of these languages, then please contact us.
The EPQ is currently being translated into Hebrew, Malay, Polish, and Thai.
Allison F Vitonis, Katy Vincent, Nilufer Rahmioglu, Amelie Fassbender, Germaine M Buck Louis, Lone Hummelshoj, Linda C Giudice, Pamela Stratton, G David Adamson, Christian M Becker, Krina T Zondervan, Stacey A Missmer; WERF EPHect Working Group. World Endometriosis Research Foundation (WERF) Endometriosis Phenome and biobanking harmonization project (EPHect): II. Clinical and covariate phenotype data collection in endometriosis research. Fertil Steril 2014;102(5):1223-1232
Investigators using EPHect tools are asked to include the following acknowledgment in all publications and presentations that utilise data collected using the EPHect questionnaires, forms, or sample collection protocols:
"Data collection was facilitated by and conducted in compliance with the Endometriosis Phenome and Biobanking Harmonisation Project (EPHect)."
Please also cite the above paper whenever data collected utilising these protocols are published.
In addition, investigators whose data collection tools or methods included alterations to the EPHect standardised protocols are asked to describe those changes in the Methods section of manuscripts and when presenting their study results.
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