title: World Endometriosis Research Foundation Endometriosis Phenome and Biobanking Harmonisation Project: I. Surgical phenotype data collection in endometriosis research.
abstract: OBJECTIVE
  To standardize the recording of surgical phenotypic information on endometriosis and related sample collections obtained at laparoscopy, allowing large-scale collaborative research into the condition.
  
  
  METHODS
  An international collaboration involving 34 clinical/academic centers and three industry collaborators from 16 countries.
  
  
  METHODS
  Two workshops were conducted in 2013, bringing together 54 clinical, academic, and industry leaders in endometriosis research and management worldwide.
  
  
  METHODS
  None.
  
  
  METHODS
  A postsurgical scoring sheet containing general and gynecological patient and procedural information, extent of disease, the location and type of endometriotic lesion, and any other findings was developed during several rounds of review. Comments and any systematic surgical data collection tools used in the reviewers' centers were incorporated.
  
  
  METHODS
  The development of a standard recommended (SSF) and minimum required (MSF) form to collect data on the surgical phenotype of endometriosis.
  
  
  RESULTS
  SSF and MSF include detailed descriptions of lesions, modes of procedures and sample collection, comorbidities, and potential residual disease at the end of surgery, along with previously published instruments such as the revised American Society for Reproductive Medicine and Endometriosis Fertility Index classification tools for comparison and validation.
  
  
  CONCLUSIONS
  This is the first multicenter, international collaboration between academic centers and industry addressing standardization of phenotypic data collection for a specific disease. The Endometriosis Phenome and Biobanking Harmonisation Project SSF and MSF are essential tools to increase our understanding of the pathogenesis of endometriosis by allowing large-scale collaborative research into the condition.
authors.affiliation: Nuffield Department of Obstetrics and Gynaecology, University of Oxford, Oxford, United Kingdom; Endometriosis CaRe Centre Oxford, University of Oxford, Oxford, United Kingdom. Electronic address: christian.becker@obs-gyn.ox.ac.uk.
authors.forename: Christian M
authors.initials: CM
authors.lastname: Becker
authors.affiliation: Division of Gynecology, Department of Surgery, Boston Children's Hospital and Harvard Medical School, Boston, Massachusetts; 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: Marc R
authors.initials: MR
authors.lastname: Laufer
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, London, United Kingdom.
authors.forename: Lone
authors.initials: L
authors.lastname: Hummelshoj
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.
authors.forename: Stacey A
authors.initials: SA
authors.lastname: Missmer
authors.affiliation: Nuffield Department of Obstetrics and Gynaecology, University of Oxford, Oxford, United Kingdom; Endometriosis CaRe Centre Oxford, University of Oxford, Oxford, United Kingdom; Wellcome Trust Centre for Human Genetics, University of Oxford, Oxford, United Kingdom.
authors.forename: Krina T
authors.initials: KT
authors.lastname: Zondervan
authors.affiliation: World Endometriosis Research Foundation, 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
mesh_terms: D035843:Biomedical Research / Q000379:methods*; D004493:Education; D004715:Endometriosis / Q000145:classification* / 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 SSF; Endometriosis; harmonization; laparoscopy; phenotyping; standardization