Cited by 236Endometriosis Research and TreatmentEctopic Pregnancy Diagnosis and ManagementMenstrual Health and Disorders

The DOI matches its Crossref record; 79 of the 81 references it cites were found in a registry or an index; 6 of the 76 sources its claims cite were checked for support.

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

Open access
Vitonis, Allison F., Vincent, Katy, Rahmioglu, Nilufer, Fassbender, Amelie, Buck Louis, Germaine M., Hummelshoj, Lone, Giudice, Linda C., Stratton, Pamela, Adamson, G. David, Becker, Christian M., Zondervan, Krina T., Missmer, Stacey A., Adamson, G.D., Allaire, C., Anchan, R., Becker, C.M., Bedaiwy, M.A., Buck Louis, G.M., Calhaz-Jorge, C., Chwalisz, K., D'Hooghe, T.M., Fassbender, A., Faustmann, T., Fazleabas, A.T., Flores, I., Forman, A., Fraser, I., Giudice, L.C., Gotte, M., Gregersen, P., Guo, S.-W., Harada, T., Hartwell, D., Horne, A.W., Hull, M.L., Hummelshoj, L., Ibrahim, M.G., Kiesel, L., Laufer, M.R., Machens, K., Mechsner, S., Missmer, S.A., Montgomery, G.W., Nap, A., Nyegaard, M., Osteen, K.G., Petta, C.A., Rahmioglu, N., Renner, S.P., Riedlinger, J., Roehrich, S., Rogers, P.A., Rombauts, L., Salumets, A., Saridogan, E., Seckin, T., Stratton, P., Sharpe-Timms, K.L., Tworoger, S., Vigano, P., Vincent, K., Vitonis, A.F., Wienhues-Thelen, U.-H., Yeung, P.P., Yong, P., Zondervan, K.T.·2014·Fertility and Sterility

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.

Overview

AI snapshot

Written from the paper’s full text.

TL;DR

The WERF EPHect Working Group developed standard recommended (EPQ-S) and minimum required (EPQ-M) self-administered questionnaires to harmonize nonsurgical clinical and epidemiologic data collection in endometriosis research. The instruments cover pain, subfertility/reproductive history, menstrual and hormone history, medical/surgical history, medication use, and personal/lifestyle information, with planned periodic review.

Key findings

  • 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.
  • Development involved 34 clinical/academic centers and three industry collaborators (54 participants) from 16 countries on five continents, and was based on questionnaires from eight centers that had published on >100 cases.
  • Pilot work in several EPHect centers showed the full standard questionnaire requires 25 to 40 minutes to complete in paper or electronic form; the EPQ-M excludes life-course sections considered secondary in some settings.
  • Pain intensity is measured on an 11-point numerical rating scale; the EPQ includes the SF-MPQ, recommends SF-MPQ-2 as standard, and includes the 13-question Pain Catastrophizing Scale; menstrual flow is classified using a validated menstrual pictogram.

Methods

  • International consensus process: two workshops in March 2013 and July 2013, followed by global consultation, bringing together 54 leaders in endometriosis research; 34 clinical/academic centers and three industry collaborators from 16 countries participated.
  • Questionnaire development used systematic comparison of questionnaires from eight centers, a PubMed literature search, expert review of question phrasing and temporality, patient/volunteer piloting, face-validity review, and consensus at Workshop II.
  • No patients were included; ethics committee or IRB approval was not required for formation of the Working Group, literature review, or consensus on best practices, and the endeavor did not include human subjects data.

Limitations

  • Stated: the EPQ is not designed for clinical practice to inform immediate clinical decisions, nor for in-clinic completion and immediate review.
  • Stated: the Working Group excluded potentially important exposures such as nevi and freckles, sun exposure, and in utero exposures, and did not include validated generic health status or depression/anxiety scales because some require registration and/or payment; self-administered questionnaires are also not appropriate for accurately collecting detailed infertility treatment data.
  • Evident from the text: no formal psychometric validation of the full EPQ is reported; validation relies on previously validated component questions, piloting, and face-validity review.

Model-written summary. Check it against the paper before relying on it.

Integrity signals

Registry

Crossref · 10.1016/j.fertnstert.2014.07.1244

Cites

79 of 79 references verified0 citation errors · 0 not checkable

Statistics

Nothing to recompute.

Figures

FIGURE 1 Flow diagram depicting the WERF EPHect development and consensus process (clinical data collection).
FIGURE 1 Flow diagram depicting the WERF EPHect development and consensus process (clinical data collection).CC BY-NC-ND · PubMed Central
FIGURE 2 Mechanisms by which the nervous system can be engaged in endometriosis (17). Endometriotic lesions appear to be able to engage the nervous system throughout the neuroaxis. In addition to developing their own innervation [both peptidergic sensory (blue) and sympathetic nerve fibers (green)], all nerve fibers within the pelvis may become sensitized (red asterisk), as may the central nervous system. The extent of peripheral sensitization is dynamically modulated by estradiol and sympathetic-sensory coupling, and other factors may modulate central sensitization.
FIGURE 2 Mechanisms by which the nervous system can be engaged in endometriosis (17). Endometriotic lesions appear to be able to engage the nervous system throughout the neuroaxis. In addition to developing their own innervation [both peptidergic sensory (blue) and sympathetic nerve fibers (green)], all nerve fibers within the pelvis may become sensitized (red asterisk), as may the central nervous system. The extent of peripheral sensitization is dynamically modulated by estradiol and sympathetic-sensory coupling, and other factors may modulate central sensitization.CC BY-NC-ND · PubMed Central
FIGURE 3 Factors influencing nociceptive inputs to affect pain perception (18). A variety of factors modulate incoming signals such that the experience of pain is not linearly related to the nociceptive input.
FIGURE 3 Factors influencing nociceptive inputs to affect pain perception (18). A variety of factors modulate incoming signals such that the experience of pain is not linearly related to the nociceptive input.CC BY-NC-ND · PubMed Central

Verification

Claims the paper makes

40 Not checked yet · 19 No basis given · 14 Own interpretation · 10 Own method · 3 Partly supported · 2 Own result · accuracy not yet measured

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Show all 27 claims

  • It may state two separate claims as one. 23
  • Probably not a substantial claim. 55
61 of 61
  • The paper relies on this without support.

    Endometriosis is heterogeneous with respect to its natural history, disease burden, extent of inflammation, state of progression, and phenotypic presentation of lesions and symptoms.

    “It is generally accepted that endometriosis is a heterogeneous disease with respect to its natural history, disease burden, extent of inflammation, state of progression, and phenotypic presentation of lesions and symptoms.”
  • The paper relies on this without support.

    Important nonsurgical aspects characterize patient subpopulations, including symptomatology and nonsymptomatic phenotypes such as anthropometric characteristics, ethnicity, and reproductive and demographic factors.

    “There are important nonsurgical aspects that characterize patient (sub)populations, including symptomatology (onset, duration, extent and severity of symptoms, comorbidity) and other nonsymptomatic phenotypes such as anthropometric characteristics, ethnicity, and reproductive and demographic factors.”
  • The paper relies on this without support.

    Women with endometriosis experience a variety of pain symptoms, most commonly dysmenorrhea, noncyclical pelvic pain, dyspareunia, and dyschezia.

    “Women with endometriosis experience a variety of pain symptoms, most commonly dysmenorrhea, noncyclical pelvic pain, dyspareunia, and dyschezia.”
  • The paper relies on this without support.

    The three main mechanisms generating pain are nociceptive, inflammatory, and neuropathic or centrally generated pain.

    “The three main mechanisms generating pain are [1] nociceptive, [2] inflammatory, and [3] neuropathic or centrally generated pain”
  • The paper relies on this without support.

    Comorbidity is an important potential confounding factor in assessing symptom extent and severity.

    “Comorbidity is an important potential confounding factor in assessing symptom extent and severity.”
  • The paper relies on this without support.

    Older women or women already known to have conditions that can lead to infertility might not try for 12 months before seeking medical intervention.

    “as older women (such as women >35 years old) or women already known to have conditions that can lead to infertility might not try for 12 months before seeking medical intervention”
  • The paper relies on this without support.

    Accuracy of diagnosis has varied across generations.

    “while recognizing that accuracy of diagnosis has varied across generations.”
  • The paper relies on this without support.

    Some drugs may interact with the biomarkers to be studied and may thus distort the results.

    “Collecting information on recent medication use is important for biomarker research as some drugs may interact with the biomarkers to be studied and may thus distort the results.”
  • The paper relies on this without support.

    Medications for chronic pain or inflammatory conditions or for other symptoms, such as depression or anxiety, may affect pain reporting.

    “Medications for chronic pain or inflammatory conditions or for other symptoms, such as depression or anxiety, may affect pain reporting.”
  • The paper relies on this without support.

    The demographic data required for interpretation of any epidemiologic study result include age, race/ethnicity, major ancestry, and highest level of education attained.

    “The demographic data that are required for interpretation of any epidemiologic study result include age, race/ethnicity, major ancestry, and highest level of education attained, and are collected on the EPHect EPQ.”
  • The paper relies on this without support.

    None of the longstanding, validated component parts of the EPQ have been applied in an immediate point-of-care setting.

    “Additionally, to our knowledge, none of the longstanding, validated component parts of the EPQ have been applied in an immediate point-of-care setting.”
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Metadata

Authors
Vitonis, A. F., Vincent, K., Rahmioglu, N., Fassbender, A., Buck Louis, G. M., Hummelshoj, L., Giudice, L. C., Stratton, P., Adamson, G. D., Becker, C. M., Zondervan, K. T., Missmer, S. A., Adamson, G. D., Allaire, C., Anchan, R., Becker, C. M., Bedaiwy, M. A., Buck Louis, G. M., Calhaz-Jorge, C., Chwalisz, K., D'Hooghe, T. M., Fassbender, A., Faustmann, T., Fazleabas, A. T., Flores, I., Forman, A., Fraser, I., Giudice, L. C., Gotte, M., Gregersen, P., Guo, S.-W., Harada, T., Hartwell, D., Horne, A. W., Hull, M. L., Hummelshoj, L., Ibrahim, M. G., Kiesel, L., Laufer, M. R., Machens, K., Mechsner, S., Missmer, S. A., Montgomery, G. W., Nap, A., Nyegaard, M., Osteen, K. G., Petta, C. A., Rahmioglu, N., Renner, S. P., Riedlinger, J., Roehrich, S., Rogers, P. A., Rombauts, L., Salumets, A., Saridogan, E., Seckin, T., Stratton, P., Sharpe-Timms, K. L., Tworoger, S., Vigano, P., Vincent, K., Vitonis, A. F., Wienhues-Thelen, U.-H., Yeung, P. P., Yong, P., & Zondervan, K. T.
Affiliations
  • World Endometriosis Research Foundation (GB)
  • Brigham and Women's Hospital (US)
  • Eunice Kennedy Shriver National Institute of Child Health and Human Development (US)
  • Centre for Human Genetics (GB)
  • National Institutes of Health (US)
Corresponding author
  • Hartwell, D.
  • Mechsner, S.
  • Nyegaard, M.
  • Roehrich, S.
  • Tworoger, S.
Venue
Fertility and Sterility
Publisher
Elsevier BV
Published
2014-11
Volume
102
Issue
5
Pages
1223-1232
ISSN
0015-0282 (ISSN-L)
OpenAlex
W2164565395
Cited by
236
References
81
Citations by year
2026: 13 · 2025: 28 · 2024: 30 · 2023: 24 · 2022: 29 · 2021: 20 · 2020: 28 · 2019: 13 · 2018: 14 · 2017: 12 · 2016: 16 · 2015: 6 · 2014: 3
FWCI
1.93
Type
journal article
Language
en
Open access
Locations
  • Fertility and Sterility (publishedVersion, cc-by-nc-nd)
  • PubMed (publishedVersion)
  • Europe PMC (PubMed Central) (acceptedVersion, cc-by-nc-nd)
  • PubMed Central (acceptedVersion, cc-by-nc-nd)
  • Minerva Access (University of Melbourne) (submittedVersion, cc-by-nc-nd)
  • Digital Access to Scholarship at Harvard (DASH) (Harvard University) (submittedVersion, cc-by)
  • eScholarship (California Digital Library) (submittedVersion)
Funders
  • Ernst Schering Foundation
  • J. Willard and Alice S. Marriott Foundation
  • Roche
  • Health Technology Assessment Programme
  • National Institute for Health Research
  • Puerto Rico Science, Technology and Research Trust (2013-000032)
  • Wellcome Trust (WT085235/Z/08/Z)
  • Medical Research Council (MR/K011480/1)
  • National Institutes of Health
  • Chief Scientist Office
  • Eunice Kennedy Shriver National Institute of Child Health and Human Development (HD57210)
  • Astellas Pharma US
  • Boston Center for Endometriosis
Topics
  • Health Sciences › Medicine › Reproductive Medicine › Endometriosis Research and Treatment
  • Health Sciences › Medicine › Obstetrics and Gynecology › Ectopic Pregnancy Diagnosis and Management
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Menstrual Health and Disorders
Keywords
endometriosis, pelvic pain, subfertility, menstrual history, reproductive history, hormone use, medical history, biobanking, international research collaboration
MeSH terms
Education, Endometriosis, Female, Humans, Medical History Taking, Phenotype, Surveys and Questionnaires, Registries, Information Storage and Retrieval, Biomedical Research, Internationality

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