{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,17]],"date-time":"2026-09-17T20:13:47Z","timestamp":1789676027040,"version":"4.0.1"},"reference-count":19,"publisher":"Wiley","issue":"5","license":[{"start":{"date-parts":[[2019,6,20]],"date-time":"2019-06-20T00:00:00Z","timestamp":1560988800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"DOI":"10.13039\/100000069","name":"National Institute of Arthritis and Musculoskeletal and Skin Diseases","doi-asserted-by":"publisher","award":["1R01AR064258"],"award-info":[{"award-number":["1R01AR064258"]}],"id":[{"id":"10.13039\/100000069","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Pediatric Dermatology"],"published-print":{"date-parts":[[2019,9]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Background<\/jats:title><jats:p>Awareness of PHACE syndrome has increased; however, little information exists regarding its natural history, especially in patients over the age of 18. We aim to describe the natural history of PHACE to enhance clinical management and counseling of patients.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>A cohort of patients \u2265\u00a018\u00a0years was identified through the PHACE Syndrome Registry and a Vascular Anomalies Clinic Database. A cross\u2010sectional survey was designed after a review of the literature by PHACE experts (IF, JP, DS). Questions were selected by consensus, and the survey was conducted using the Qualtrics platform and via in\u2010person interviews. A 75% response rate was found.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Eighteen adults\u201417 females and one transgender male\u2014completed the survey. Respondents ranged in age from 18 to 59, with 24 being the mean age. Eighty\u2010nine percent reported experiencing headaches, and 17% reported experiencing acute but transient symptoms mimicking acute ischemic stroke, later diagnosed as atypical migraines. Thirty\u2010three percent reported hearing loss, and 67% endorsed dental issues. One patient experienced two arterial dissections. Three\u2010fourths who attempted conception were successful, and none of their children had clinical features of PHACE. Because results were based on a retrospective survey, data captured were prone to recall bias and not objective. Results were limited by a small sample size.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>Health care providers should be aware of a possible increased risk of neurovascular complications, including atypical migraines mimicking transient ischemic attacks and arterial dissection, in adults with PHACE. Heritability has not been demonstrated, and future studies are needed to assess the risk of infertility.<\/jats:p><\/jats:sec>","DOI":"10.1111\/pde.13871","type":"journal-article","created":{"date-parts":[[2019,6,21]],"date-time":"2019-06-21T05:58:14Z","timestamp":1561096694000},"page":"618-622","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":21,"title":["Natural history of PHACE syndrome: A survey of adults with PHACE"],"prefix":"10.1111","volume":"36","author":[{"given":"Nicole S.","family":"Stefanko","sequence":"first","affiliation":[{"name":"Medical College of Wisconsin Milwaukee Wisconsin"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0202-3954","authenticated-orcid":false,"given":"Maria\u2010Laura","family":"Cossio","sequence":"additional","affiliation":[{"name":"Sainte\u2010Justine University Hospital Center Montreal Qu\u00e9bec Canada"},{"name":"Pontificia Universidad Catolica de Chile Santiago Chile"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Julie","family":"Powell","sequence":"additional","affiliation":[{"name":"Sainte\u2010Justine University Hospital Center Montreal Qu\u00e9bec Canada"},{"name":"University of Montreal Montreal Qu\u00e9bec Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Francine","family":"Blei","sequence":"additional","affiliation":[{"name":"Lennox Hill Hospital of Northwell Health New York New York"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5428-7279","authenticated-orcid":false,"given":"Olivia M. T.","family":"Davies","sequence":"additional","affiliation":[{"name":"Medical College of Wisconsin Milwaukee Wisconsin"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ilona J.","family":"Frieden","sequence":"additional","affiliation":[{"name":"University of California, San Francisco San Francisco California"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Maria C.","family":"Garzon","sequence":"additional","affiliation":[{"name":"Columbia University New York New York"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7278-4831","authenticated-orcid":false,"given":"Christine T.","family":"Lauren","sequence":"additional","affiliation":[{"name":"Columbia University New York New York"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mohit","family":"Maheshwari","sequence":"additional","affiliation":[{"name":"Medical College of Wisconsin Milwaukee Wisconsin"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Catherine C.","family":"McCuaig","sequence":"additional","affiliation":[{"name":"Sainte\u2010Justine University Hospital Center Montreal Qu\u00e9bec Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Denise","family":"Metry","sequence":"additional","affiliation":[{"name":"Texas Children's Hospital Houston Texas"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sumaiya","family":"Salman","sequence":"additional","affiliation":[{"name":"Medical College of Wisconsin Milwaukee Wisconsin"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Beth A.","family":"Drolet","sequence":"additional","affiliation":[{"name":"Department of Dermatology Wisconsin School of Medicine and Public Health Madison Wisconsin"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6546-2693","authenticated-orcid":false,"given":"Dawn 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