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

Capsule:
An international collaboration of endometriosis research and biobanking experts has developed standardized means of recording clinical and covariate phenotypic information in endometriosis and control patients to allow large-scale collaborative research.

Authors:
Allison F. Vitonis, S.M., Katy Vincent, M.B.B.S., D.Phil., Nilufer Rahmioglu, Ph.D., Amelie Fassbender, Ph.D., Germaine M. Buck Louis, Ph.D., Lone Hummelshoj, Linda C. Giudice, M.D., Ph.D., Pamela Stratton, M.D., G. David Adamson, M.D., Christian M. Becker, M.D., Krina T. Zondervan, D.Phil, Stacey A. Missmer, Sc.D.for the WERF EPHect Working Group

Volume 102, Issue 5, Pages 1223-1232

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.

  • Anggara Mahardika

    Dear Sir/Madam,

    We would like to introduce our centre and asking some question related to
    EPHect.

    We are from Department of Obstetrics and Gynaecology, Faculty of Medicine
    Universitas Indonesia-Cipto Mangunkusumo Hospital, Jakarta, Indonesia. We
    are actually having lots of cases of endometriosis and up until now we do
    not have such standard for data collecting regarding phenotype clinical
    condition of endometriosis patients and standard of surgical form for
    reporting pre and post operative for endometriosis patients.

    It is very astonishing that WERF has the tools for this matter:
    1. WERF EPHect Clinical Quetionnaire (Standard).
    2. WERF EPHect Standard Surgical Form

    Our enquiries regarding the using of those tools in our country. We would
    like to know weather WERF EPHect Clinical Quetionnaire (Standard) and WERF
    EPHect Standard Surgical Form have already translated and validated into
    Bahasa Indonesia (Indonesian Language). If it has, is it possible if we
    contact the person/centre who did the validation? But, if these tools have
    not been translated and validated into Bahasa Indonesia, we would like to
    make the study about translation and validation of those tools (WERF
    EPHect Clinical Quetionnaire (Standard), WERF EPHect Standard Surgical
    Form) into Indonesian version.

    We will start with the EPQ-S for translation and validation since this
    tools will be very helpful for our research and phenotype data collection
    in the future.

    Our plan is translating the EPQ-S using forward-backward translation
    method, and we will send to you later the result of the backward
    translation for your approval. Later we will validate the questionnaire
    and study the reliability in our centre.

    We hope that this could be our centre’s preliminary role in order to
    cooperate and collaborate for EPHect.

    Please let us know, and your respond is very much appreciated.

    Sincerely yours,
    Anggara Mahardika, MD
    a.mdk.88@gmail.com
    on behalf of
    Gita Pratama, MD, OG, MrepSc
    Department Obstetric and Gynecology
    Faculty of Medicine, Universitas Indonesia
    Cipto Mangunkusumo Hospital

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