Full spectrum town halls for hidradenitis suppurativa: A model for advancing clinician–patient–researcher engagement in clinical and translational research
Hidradenitis suppurativa (HS) is a chronic, painful inflammatory skin disease affecting 0.1% of the US population. Limited understanding of HS biology and ineffective treatments leave patients dissatisfied, facing misdiagnosis, and diagnostic delays. To address these challenges, the Rockefeller Univ...
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| Format: | Article |
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Cambridge University Press
2025-01-01
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| Series: | Journal of Clinical and Translational Science |
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| Online Access: | https://www.cambridge.org/core/product/identifier/S2059866125000627/type/journal_article |
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| author | Anuradha Hashemi-Arend Michelle A. Lowes John W. Frew James Krueger Athena Gierbolini Monisa Nayim Melissa Samanoglu PaMalick Mbye Fahim Shahriar Jonathan N. Tobin Rhonda G. Kost |
| author_facet | Anuradha Hashemi-Arend Michelle A. Lowes John W. Frew James Krueger Athena Gierbolini Monisa Nayim Melissa Samanoglu PaMalick Mbye Fahim Shahriar Jonathan N. Tobin Rhonda G. Kost |
| author_sort | Anuradha Hashemi-Arend |
| collection | DOAJ |
| description | Hidradenitis suppurativa (HS) is a chronic, painful inflammatory skin disease affecting 0.1% of the US population. Limited understanding of HS biology and ineffective treatments leave patients dissatisfied, facing misdiagnosis, and diagnostic delays. To address these challenges, the Rockefeller University Center for Clinical Translational Science, Clinical Directors Network, and the HS Foundation launched an initiative to foster engagement among stakeholders. Three full spectrum town halls (FSTH) were designed to engage patients, scientists, and clinicians bidirectionally. Topics spanned the translational research spectrum to amplify patient testimony, update the HS community on scientific and clinical research advances, and promote patient-centered research and care. The FSTH model aims to enhance empathy, foster trust, accelerate scientific discovery, and improve care. FSTH-2018 showcased patients’ experiences living with HS, the scientific and clinical state of the art, and tailored a new HS study to patient preferences. FSTH-2021 shared results of the study, including new insights into HS biology. FSTH-2023 highlighted best practices for outpatient surgical care of HS. Participant feedback underscored FSTH’s role in nurturing empathy and advancing discovery and patient engagement. FSTH serves as an effective model for uniting stakeholders, bridging gaps in knowledge and trust, and accelerating translational research to improve HS care. |
| format | Article |
| id | doaj-art-175036a1f3cf4eaca0ca77fbbbc1a923 |
| institution | DOAJ |
| issn | 2059-8661 |
| language | English |
| publishDate | 2025-01-01 |
| publisher | Cambridge University Press |
| record_format | Article |
| series | Journal of Clinical and Translational Science |
| spelling | doaj-art-175036a1f3cf4eaca0ca77fbbbc1a9232025-08-20T02:58:19ZengCambridge University PressJournal of Clinical and Translational Science2059-86612025-01-01910.1017/cts.2025.62Full spectrum town halls for hidradenitis suppurativa: A model for advancing clinician–patient–researcher engagement in clinical and translational researchAnuradha Hashemi-Arend0https://orcid.org/0000-0002-3604-7869Michelle A. Lowes1John W. Frew2James Krueger3Athena Gierbolini4Monisa Nayim5Melissa Samanoglu6PaMalick Mbye7Fahim Shahriar8Jonathan N. Tobin9https://orcid.org/0000-0003-4722-539XRhonda G. Kost10https://orcid.org/0000-0002-5419-0589The Rockefeller University, Center for Clinical Translational Science, New York, NY, USAThe Hidradenitis Suppurativa (HS) Foundation, Cary, NC, USAUniversity of New South Wales, Liverpool Hospital, Liverpool, NSW, AustraliaThe Rockefeller University, Center for Clinical Translational Science, New York, NY, USAThe Hidradenitis Suppurativa (HS) Foundation, Cary, NC, USAClinical Directors Network (CDN), New York, NY, USAClinical Directors Network (CDN), New York, NY, USAClinical Directors Network (CDN), New York, NY, USAClinical Directors Network (CDN), New York, NY, USAThe Rockefeller University, Center for Clinical Translational Science, New York, NY, USA Clinical Directors Network (CDN), New York, NY, USAThe Rockefeller University, Center for Clinical Translational Science, New York, NY, USAHidradenitis suppurativa (HS) is a chronic, painful inflammatory skin disease affecting 0.1% of the US population. Limited understanding of HS biology and ineffective treatments leave patients dissatisfied, facing misdiagnosis, and diagnostic delays. To address these challenges, the Rockefeller University Center for Clinical Translational Science, Clinical Directors Network, and the HS Foundation launched an initiative to foster engagement among stakeholders. Three full spectrum town halls (FSTH) were designed to engage patients, scientists, and clinicians bidirectionally. Topics spanned the translational research spectrum to amplify patient testimony, update the HS community on scientific and clinical research advances, and promote patient-centered research and care. The FSTH model aims to enhance empathy, foster trust, accelerate scientific discovery, and improve care. FSTH-2018 showcased patients’ experiences living with HS, the scientific and clinical state of the art, and tailored a new HS study to patient preferences. FSTH-2021 shared results of the study, including new insights into HS biology. FSTH-2023 highlighted best practices for outpatient surgical care of HS. Participant feedback underscored FSTH’s role in nurturing empathy and advancing discovery and patient engagement. FSTH serves as an effective model for uniting stakeholders, bridging gaps in knowledge and trust, and accelerating translational research to improve HS care.https://www.cambridge.org/core/product/identifier/S2059866125000627/type/journal_articlePatient experiencelived experiencereducing stigmaempathy for rare diseasepatient advocacy |
| spellingShingle | Anuradha Hashemi-Arend Michelle A. Lowes John W. Frew James Krueger Athena Gierbolini Monisa Nayim Melissa Samanoglu PaMalick Mbye Fahim Shahriar Jonathan N. Tobin Rhonda G. Kost Full spectrum town halls for hidradenitis suppurativa: A model for advancing clinician–patient–researcher engagement in clinical and translational research Journal of Clinical and Translational Science Patient experience lived experience reducing stigma empathy for rare disease patient advocacy |
| title | Full spectrum town halls for hidradenitis suppurativa: A model for advancing clinician–patient–researcher engagement in clinical and translational research |
| title_full | Full spectrum town halls for hidradenitis suppurativa: A model for advancing clinician–patient–researcher engagement in clinical and translational research |
| title_fullStr | Full spectrum town halls for hidradenitis suppurativa: A model for advancing clinician–patient–researcher engagement in clinical and translational research |
| title_full_unstemmed | Full spectrum town halls for hidradenitis suppurativa: A model for advancing clinician–patient–researcher engagement in clinical and translational research |
| title_short | Full spectrum town halls for hidradenitis suppurativa: A model for advancing clinician–patient–researcher engagement in clinical and translational research |
| title_sort | full spectrum town halls for hidradenitis suppurativa a model for advancing clinician patient researcher engagement in clinical and translational research |
| topic | Patient experience lived experience reducing stigma empathy for rare disease patient advocacy |
| url | https://www.cambridge.org/core/product/identifier/S2059866125000627/type/journal_article |
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