{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,30]],"date-time":"2026-06-30T19:06:27Z","timestamp":1782846387246,"version":"3.54.5"},"reference-count":10,"publisher":"JMIR Publications Inc.","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["JMIR Form Res"],"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:p>This study analyzed social media posts from patients with congenital ichthyosis and their caregivers across Europe and found that users, primarily young women, discussed hygiene care, psychological impact, therapeutic challenges, and lack of disease awareness. This allowed for the identification of unmet needs and potential actions to improve patients\u2019 quality of life.<\/jats:p>","DOI":"10.2196\/79761","type":"journal-article","created":{"date-parts":[[2026,1,27]],"date-time":"2026-01-27T05:25:10Z","timestamp":1769491510000},"page":"e79761-e79761","source":"Crossref","is-referenced-by-count":0,"title":["Social Media Listening in Congenital Ichthyosis: Quantitative and Qualitative Findings"],"prefix":"10.2196","volume":"10","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-4122-6623","authenticated-orcid":false,"given":"Ma\u00eblla","family":"Severino-Freire","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6274-0341","authenticated-orcid":false,"given":"C\u00e9line","family":"Granier Tournier","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4489-0071","authenticated-orcid":false,"given":"Jo\u00eblle","family":"Malaab","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7284-9949","authenticated-orcid":false,"given":"Kira","family":"S\u00fc\u00dfmuth","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1091-2914","authenticated-orcid":false,"given":"Antoni","family":"Gostynski","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7260-8718","authenticated-orcid":false,"given":"\u00c1ngela","family":"Hern\u00e1ndez-Mart\u00edn","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6259-9790","authenticated-orcid":false,"given":"Juliette","family":"Mazereeuw-Hautier","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1010","published-online":{"date-parts":[[2026,3,18]]},"reference":[{"issue":"3","key":"R1","doi-asserted-by":"publisher","first-page":"544","DOI":"10.1093\/bjd\/ljaf065","article-title":"A proposal for a new pathogenesis-guided classification for inherited epidermal differentiation disorders","volume":"193","author":"Hern\u00e1ndez-Mart\u00edn","journal-title":"Br J Dermatol"},{"issue":"3","key":"R2","doi-asserted-by":"publisher","first-page":"646","DOI":"10.1111\/j.1365-2133.2011.10701.x","article-title":"Factors influencing quality of life in patients with inherited ichthyosis: a qualitative study in adults using focus groups","volume":"166","author":"Mazereeuw-Hautier","journal-title":"Br J Dermatol"},{"issue":"3","key":"R3","doi-asserted-by":"publisher","first-page":"553","DOI":"10.1093\/bjd\/ljae436","article-title":"The perceived quality of life in adult patients with inherited ichthyosis: a qualitative interview study","volume":"192","author":"van Veen","journal-title":"Br J Dermatol"},{"key":"R4","unstructured":"Fox S . Pew Research Center. Profiles of health information seekers; 2011. URL: https:\/\/www.pewresearch.org\/internet\/2011\/02\/01\/profiles-of-health-information-seekers\/ [Accessed 23-01-2026]"},{"issue":"1","key":"R5","doi-asserted-by":"publisher","DOI":"10.2196\/31140","article-title":"Social media platforms listening study on atopic dermatitis: quantitative and qualitative findings","volume":"24","author":"Voillot","journal-title":"J Med Internet Res"},{"issue":"9","key":"R6","doi-asserted-by":"publisher","first-page":"2127","DOI":"10.1016\/j.jid.2025.05.027","article-title":"The importance of shared patient voices in advancing science for genodermatoses on a global scale","volume":"145","author":"van Veen","journal-title":"J Invest Dermatol"},{"key":"R7","unstructured":"Documents for patients. ERN-Skin (European Reference Networks for Rare Skin Diseases). URL: https:\/\/ern-skin.eu\/documents_patients\/ [Accessed 19-02-2026]"},{"issue":"6","key":"R8","doi-asserted-by":"publisher","first-page":"e531","DOI":"10.1111\/jdv.19737","article-title":"A large language model artificial intelligence for patient queries in atopic dermatitis","volume":"38","author":"Sulejmani","journal-title":"J Eur Acad Dermatol Venereol"},{"issue":"6","key":"R9","doi-asserted-by":"publisher","first-page":"589","DOI":"10.1001\/jamainternmed.2023.1838","article-title":"Comparing physician and artificial intelligence chatbot responses to patient questions posted to a public social media forum","volume":"183","author":"Ayers","journal-title":"JAMA Intern Med"},{"key":"R10","doi-asserted-by":"publisher","DOI":"10.1016\/j.jdin.2024.08.013","article-title":"The global reach of artificial intelligence in atopic dermatitis: the quality and reliability of ChatGPT responses in 8 languages","volume":"17","author":"Sulejmani","journal-title":"JAAD Int"}],"container-title":["JMIR Formative Research"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/formative.jmir.org\/2026\/1\/e79761","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,6,30]],"date-time":"2026-06-30T18:12:58Z","timestamp":1782843178000},"score":1,"resource":{"primary":{"URL":"https:\/\/formative.jmir.org\/2026\/1\/e79761"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,3,18]]},"references-count":10,"URL":"https:\/\/doi.org\/10.2196\/79761","relation":{},"ISSN":["2561-326X"],"issn-type":[{"value":"2561-326X","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,3,18]]},"article-number":"v10i3e79761"}}