title: World Endometriosis Research Foundation Endometriosis Phenome and Biobanking Harmonization Project: II. Clinical and covariate phenotype data collection in endometriosis research.
abstract: OBJECTIVE
  To harmonize the collection of nonsurgical clinical and epidemiologic data relevant to endometriosis research, allowing large-scale collaboration.
  
  
  METHODS
  An international collaboration involving 34 clinical/academic centers and three industry collaborators from 16 countries on five continents.
  
  
  METHODS
  In 2013, two workshops followed by global consultation, bringing together 54 leaders in endometriosis research.
  
  
  METHODS
  None.
  
  
  METHODS
  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.
  
  
  METHODS
  Standard recommended and minimum required questionnaires to capture detailed clinical and covariate data.
  
  
  RESULTS
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Department 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.
authors.forename: Allison F
authors.initials: AF
authors.lastname: Vitonis
authors.affiliation: Nuffield Department of Obstetrics and Gynaecology, University of Oxford, Oxford, United Kingdom.
authors.forename: Katy
authors.initials: K
authors.lastname: Vincent
authors.affiliation: Wellcome Trust Centre for Human Genetics, University of Oxford, Oxford, United Kingdom.
authors.forename: Nilufer
authors.initials: N
authors.lastname: Rahmioglu
authors.affiliation: Organ 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.
authors.forename: Amelie
authors.initials: A
authors.lastname: Fassbender
authors.affiliation: Division of Intramural Population Health Research, Eunice Kennedy Shriver National Institute of Child Health and Human Development, Bethesda, Maryland.
authors.forename: Germaine M
authors.initials: GM
authors.lastname: Buck Louis
authors.affiliation: World Endometriosis Research Foundation (WERF), London, United Kingdom.
authors.forename: Lone
authors.initials: L
authors.lastname: Hummelshoj
authors.affiliation: World Endometriosis Research Foundation (WERF), London, United Kingdom; University of California-San Francisco, San Francisco, California.
authors.forename: Linda C
authors.initials: LC
authors.lastname: Giudice
authors.affiliation: Program in Reproductive and Adult Endocrinology, Intramural Program, Eunice Kennedy Shriver National Institute of Child Health and Human Development, National Institutes of Health, Bethesda, Maryland.
authors.forename: Pamela
authors.initials: P
authors.lastname: Stratton
authors.affiliation: World Endometriosis Research Foundation (WERF), London, United Kingdom; Palo Alto Medical Foundation Fertility Physicians of Northern California, Palo Alto, California.
authors.forename: G David
authors.initials: GD
authors.lastname: Adamson
authors.affiliation: Nuffield Department of Obstetrics and Gynaecology, University of Oxford, Oxford, United Kingdom; Endometriosis CaRe Centre Oxford, University of Oxford, Oxford, United Kingdom.
authors.forename: Christian M
authors.initials: CM
authors.lastname: Becker
authors.affiliation: Nuffield 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.
authors.forename: Krina T
authors.initials: KT
authors.lastname: Zondervan
authors.affiliation: Department 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.
authors.forename: Stacey A
authors.initials: SA
authors.lastname: Missmer
mesh_terms: D035843:Biomedical Research / Q000379:methods*; D004493:Education; D004715:Endometriosis / Q000145:classification* / Q000235:genetics / Q000473:pathology / Q000601:surgery*; D005260:Female; D006801:Humans; D016247:Information Storage and Retrieval / Q000379:methods*; D038622:Internationality; D008487:Medical History Taking / Q000379:methods*; D010641:Phenotype; D012042:Registries; D011795:Surveys and Questionnaires
keywords: EPHect EPQ; Endometriosis; pelvic pain; questionnaire; standardization; symptoms