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Fertil Steril. 2014 Nov;102(5):1223-32. doi: 10.1016/j.fertnstert.2014.07.1244. Epub 2014 Sep 22.

World Endometriosis Research Foundation Endometriosis Phenome and Biobanking Harmonization Project: II. Clinical and covariate phenotype data collection in endometriosis research.

Author information

  • 1Department of Obstetrics, Gynecology, and Reproductive Biology, Brigham and Women's Hospital and Harvard Medical School, Boston, Massachusetts; Boston Center for Endometriosis, Boston Children's Hospital and Brigham and Women's Hospital, Boston, Massachusetts.
  • 2Nuffield Department of Obstetrics and Gynaecology, University of Oxford, Oxford, United Kingdom.
  • 3Wellcome Trust Centre for Human Genetics, University of Oxford, Oxford, United Kingdom.
  • 4Organ Systems, Department of Development and Regeneration, Katholieke Universiteit Leuven, Leuven, Belgium; Department of Obstetrics and Gynecology, Leuven University Fertility Center, University Hospital Leuven, Leuven, Belgium.
  • 5Division of Intramural Population Health Research, Eunice Kennedy Shriver National Institute of Child Health and Human Development, Bethesda, Maryland.
  • 6World Endometriosis Research Foundation (WERF), London, United Kingdom.
  • 7World Endometriosis Research Foundation (WERF), London, United Kingdom; University of California-San Francisco, San Francisco, California.
  • 8Program in Reproductive and Adult Endocrinology, Intramural Program, Eunice Kennedy Shriver National Institute of Child Health and Human Development, National Institutes of Health, Bethesda, Maryland.
  • 9World Endometriosis Research Foundation (WERF), London, United Kingdom; Palo Alto Medical Foundation Fertility Physicians of Northern California, Palo Alto, California.
  • 10Nuffield Department of Obstetrics and Gynaecology, University of Oxford, Oxford, United Kingdom; Endometriosis CaRe Centre Oxford, University of Oxford, Oxford, United Kingdom.
  • 11Nuffield Department of Obstetrics and Gynaecology, University of Oxford, Oxford, United Kingdom; Wellcome Trust Centre for Human Genetics, University of Oxford, Oxford, United Kingdom; Endometriosis CaRe Centre Oxford, University of Oxford, Oxford, United Kingdom.
  • 12Department of Obstetrics, Gynecology, and Reproductive Biology, Brigham and Women's Hospital and Harvard Medical School, Boston, Massachusetts; Boston Center for Endometriosis, Boston Children's Hospital and Brigham and Women's Hospital, Boston, Massachusetts; Channing Division of Network Medicine, Department of Medicine, Brigham and Women's Hospital and Harvard Medical School, Boston, Massachusetts; Department of Epidemiology, Harvard School of Public Health, Boston, Massachusetts. Electronic address: stacey.missmer@channing.harvard.edu.

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.

Copyright © 2014 The Authors. Published by Elsevier Inc. All rights reserved.

KEYWORDS:

EPHect EPQ; Endometriosis; pelvic pain; questionnaire; standardization; symptoms

PMID:
25256930
[PubMed - indexed for MEDLINE]
PMCID:
PMC4252538
Free PMC Article
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