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      Menses, pregnancy, delivery, and menopause in hidradenitis suppurativa: A patient survey

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          Abstract

          Background

          Hidradenitis suppurativa (HS) is a chronic inflammatory disorder that primarily affects women of childbearing age. There is a paucity of data on HS disease activity during menstruation, pregnancy, and menopause and the potential impact of HS on the method of delivery.

          Objective

          We aimed to characterize the natural history of HS symptoms during menses, pregnancy, and menopause. We also sought to evaluate the potential impact of HS on delivery method and whether there were delivery-related healing complications unique to women with HS.

          Methods

          An anonymous survey was distributed via social media to international HS support groups and patients at three HS specialty clinics in North America. Responses were collected from March to July 2019.

          Results

          A total of 279 respondents answered questions on disease changes during pregnancy. Menstruation caused worsening of HS symptoms in 76.7%, no change in 22.2%, and improvement in 1.1%. During pregnancy, the distribution between symptoms worsening (34.8%), having no change (28.7%), and improving (36.6%) was relatively even. After menopause, participants typically reported either worsening (39.5%) or no change (44.2%) in HS symptoms. Among respondents with anogenital HS involvement who delivered vaginally, 3.1% believed that HS interfered with vaginal delivery (VD), and 23.5% believed that VD caused an HS flare. Cesarean section (C-section) delivery was reported by 44.2% of participants. Ten participants reported that they were advised by their doctor to have a C-section instead of a VD because of severe anogenital HS. Of those who underwent a C-section, 33.9% reported that HS interfered with incision healing, and 51.2% reported developing new HS lesions in their C-section scar.

          Conclusion

          To our knowledge, this is the first study describing the potential influence of HS on a patient’s method of delivery. Multidisciplinary collaboration plays a pivotal role in developing individualized treatment and birth plans for pregnant women with HS.

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          Most cited references9

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          Research electronic data capture (REDCap)--a metadata-driven methodology and workflow process for providing translational research informatics support.

          Research electronic data capture (REDCap) is a novel workflow methodology and software solution designed for rapid development and deployment of electronic data capture tools to support clinical and translational research. We present: (1) a brief description of the REDCap metadata-driven software toolset; (2) detail concerning the capture and use of study-related metadata from scientific research teams; (3) measures of impact for REDCap; (4) details concerning a consortium network of domestic and international institutions collaborating on the project; and (5) strengths and limitations of the REDCap system. REDCap is currently supporting 286 translational research projects in a growing collaborative network including 27 active partner institutions.
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            The REDCap consortium: Building an international community of software platform partners

            The Research Electronic Data Capture (REDCap) data management platform was developed in 2004 to address an institutional need at Vanderbilt University, then shared with a limited number of adopting sites beginning in 2006. Given bi-directional benefit in early sharing experiments, we created a broader consortium sharing and support model for any academic, non-profit, or government partner wishing to adopt the software. Our sharing framework and consortium-based support model have evolved over time along with the size of the consortium (currently more than 3200 REDCap partners across 128 countries). While the "REDCap Consortium" model represents only one example of how to build and disseminate a software platform, lessons learned from our approach may assist other research institutions seeking to build and disseminate innovative technologies.
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              Evaluating Patients’ Unmet Needs in Hidradenitis Suppurativa: results from the Global VOICE project

              A needs assessment for patients with hidradenitis suppurativa (HS) will support advancements in multidisciplinary care, treatment, research, advocacy, and philanthropy.
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                Author and article information

                Contributors
                Journal
                Int J Womens Dermatol
                Int J Womens Dermatol
                International Journal of Women's Dermatology
                Elsevier
                2352-6475
                10 July 2020
                December 2020
                10 July 2020
                : 6
                : 5
                : 368-371
                Affiliations
                [a ]University of Arizona, College of Medicine, Tucson, AZ, United States
                [b ]University of California Los Angeles, David Geffen School of Medicine, Los Angeles, CA, United States
                [c ]Department of Medicine Statistics Core, David Geffen School of Medicine, University of California, Los Angeles, CA, United States
                [d ]Department of Medicine, Division of Dermatology, University of Arizona, Tucson, AZ, United States
                [e ]Department of Medicine, Division of Dermatology, University of California Los Angeles, Los Angeles, CA, United States
                Author notes
                [* ]Corresponding author. jhsiao@ 123456mednet.ucla.edu
                Article
                S2352-6475(20)30114-3
                10.1016/j.ijwd.2020.07.002
                8060662
                33898700
                42f8aed7-5ca5-4b5d-b2f3-5bc2fc0f4fc3
                © 2020 Published by Elsevier Inc. on behalf of Women's Dermatologic Society.

                This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/).

                History
                : 13 February 2020
                : 21 June 2020
                : 2 July 2020
                Categories
                Original Research

                hidradenitis suppurativa,pregnancy,menses,menopause,delivery,cesarean section

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