World Endometriosis Research Foundation Endometriosis Phenome and Biobanking Harmonisation Project I Surgical phenotype data collection in endometriosis research

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

Authors:
Christian M. Becker, M.D., Marc R. Laufer, M.D., Pamela Stratton, M.D., Lone Hummelshoj, Stacey A. Missmer, Sc.D., Krina T. Zondervan, D.Phil., G. David Adamson, M.D. for the WERF EPHect Working Group

Volume 102, Issue 5, Pages 1213-1222

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.

Design:
An international collaboration involving 34 clinical/academic centers and three industry collaborators from 16 countries.

Setting:
Two workshops were conducted in 2013, bringing together 54 clinical, academic, and industry leaders in endometriosis research and management worldwide.

Patient(s):
None.

Intervention(s):
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.

Main Outcome Measure(s):
The development of a standard recommended (SSF) and minimum required (MSF) form to collect data on the surgical phenotype of endometriosis.

Result(s):
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.

Conclusion(s):
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.

  • Karen L. Miller, M.D.

    WERF’s Endometriosis Phenome and Biobanking Harmonisation Project is amazing. It deserves multiple “fantastics!” I really appreciate all the effort, particularly all those hours spent by named and unnamed researchers that are never tallied, but have been essential in bringing this to fruition.

    I would like to mention a concern and make a suggestion.

    I think the lack of physical examination data increases the noise-to-signal ratio, perhaps significantly. As an Ob/Gyn, I have seen countless women for pelvic pain whose actual problem had nothing to do with the pelvis. The correct diagnosis required a physical examination. No history, no imaging, no surgery could find the answer, whereas it was simple with a physical exam.

    I presume that physical examination was considered unreliable or unobtainable. However, to improve the care of women with pain, such data are necessary. I suggest that simple and specific physical examination findings should be collected. At a minimum, these could be reported with the surgical phenotype data, since all women will have been examined.

    E.g., “Are the sacroiliac joints tender?” “Is there a leg length discrepancy?” “Are there abdominal wall trigger points?” “Is there pain with hip rotation?” “Is there
    tenderness under the urethra? Trigone? Bladder?” “Is there vulvar allodynia?” “Are the levator ani/piriformis muscles tender?” And the respective locations. Simple examination instructions could be included. A diagnosis of abdominal wall myofascial pain is particularly pertinent; this would be my top choice.

    Again, this has to do with validity of findings related to pelvic pain. Exclude noise.

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