{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,10,30]],"date-time":"2025-10-30T22:28:20Z","timestamp":1761863300916},"reference-count":18,"publisher":"Wiley","issue":"2","license":[{"start":{"date-parts":[[2014,1,23]],"date-time":"2014-01-23T00:00:00Z","timestamp":1390435200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Pediatric Dermatology"],"published-print":{"date-parts":[[2014,3]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>Epidermolysis bullosa (<jats:styled-content style=\"fixed-case\">EB<\/jats:styled-content>) is a group of rare, inherited, blistering diseases that typically present in infancy. <jats:styled-content style=\"fixed-case\">EB<\/jats:styled-content> is not curable, and treatment is entirely supportive. There is a paucity of standardized recommendations to guide management. To assess the current state of <jats:styled-content style=\"fixed-case\">EB<\/jats:styled-content> care, an original online survey was conducted targeting attending physicians experienced with the care of <jats:styled-content style=\"fixed-case\">EB<\/jats:styled-content>. Members of the <jats:styled-content style=\"fixed-case\">S<\/jats:styled-content>ociety for <jats:styled-content style=\"fixed-case\">P<\/jats:styled-content>ediatric <jats:styled-content style=\"fixed-case\">D<\/jats:styled-content>ermatology residing in the <jats:styled-content style=\"fixed-case\">U<\/jats:styled-content>nited <jats:styled-content style=\"fixed-case\">S<\/jats:styled-content>tates and <jats:styled-content style=\"fixed-case\">C<\/jats:styled-content>anada served as the source pool. Parameters assessed included clinic visits, availability of subspecialists, and performance of surveillance studies. Fifty\u2010six completed surveys were analyzed. Most providers saw between 1 and 10 individuals with <jats:styled-content style=\"fixed-case\">EB<\/jats:styled-content> per year in a general dermatology clinic. For each <jats:styled-content style=\"fixed-case\">EB<\/jats:styled-content> type there was considerable variation in the frequency of clinic visits, availability and use of specialists, and use of laboratory and imaging studies. Some agreement was observed in the frequency of follow\u2010up for infants with more severe <jats:styled-content style=\"fixed-case\">EB<\/jats:styled-content> types, as well as for the components of a history, physical, and routine laboratory studies. These findings describe variations in the current state of <jats:styled-content style=\"fixed-case\">EB<\/jats:styled-content> care that pediatric dermatologists provide. The development and acceptance of evidence\u2010based guidelines and outcome measures may lead to greater uniformity in <jats:styled-content style=\"fixed-case\">EB<\/jats:styled-content> care.<\/jats:p>","DOI":"10.1111\/pde.12258","type":"journal-article","created":{"date-parts":[[2014,1,24]],"date-time":"2014-01-24T04:11:35Z","timestamp":1390536695000},"page":"169-175","source":"Crossref","is-referenced-by-count":13,"title":["A Survey of Epidermolysis Bullosa Care in the United States and Canada"],"prefix":"10.1111","volume":"31","author":[{"given":"Regina\u2010Celeste S.","family":"Ahmad","sequence":"first","affiliation":[{"name":"Department of Dermatology Stanford University Medical Center Stanford California"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Anna L.","family":"Bruckner","sequence":"additional","affiliation":[{"name":"Department of Dermatology University of Colorado School of Medicine Aurora Colorado"},{"name":"Department of Pediatrics University of Colorado School of Medicine Aurora Colorado"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2014,1,23]]},"reference":[{"key":"e_1_2_5_2_1","doi-asserted-by":"publisher","DOI":"10.1046\/j.1523-1747.2001.01279-11.x"},{"key":"e_1_2_5_3_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jaad.2008.02.004"},{"key":"e_1_2_5_4_1","doi-asserted-by":"publisher","DOI":"10.1097\/MOP.0b013e32833bb74f"},{"key":"e_1_2_5_5_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.clindermatol.2011.03.012"},{"key":"e_1_2_5_6_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.det.2010.01.005"},{"key":"e_1_2_5_7_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.det.2010.02.012"},{"key":"e_1_2_5_8_1","unstructured":"Dystrophic Epidermolysis Bullosa Research Association of America (DeBRA) International. Available athttp:\/\/debracanada.org\/support-for-eb#support(accessed September 22 2013)."},{"key":"e_1_2_5_9_1","unstructured":"Clinical Practice Guidelines (CPGs) for EB. Available athttp:\/\/www.debra-international.org\/med-professionals\/clinical-practice-guidelines-cpgs-for-eb.html(accessed September 22 2013)."},{"key":"e_1_2_5_10_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.det.2010.02.005"},{"key":"e_1_2_5_11_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jaad.2012.01.016"},{"key":"e_1_2_5_12_1","volume-title":"Best practice guidelines for skin and wound care in epidermolysis bullosa","author":"Denyer J","year":"2012"},{"key":"e_1_2_5_13_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.det.2010.01.007"},{"key":"e_1_2_5_14_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-263X.2012.01247.x"},{"key":"e_1_2_5_15_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jaad.2009.03.053"},{"key":"e_1_2_5_16_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jaad.2009.03.052"},{"key":"e_1_2_5_17_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0894-1130(98)80022-7"},{"key":"e_1_2_5_18_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.det.2010.01.013"},{"key":"e_1_2_5_19_1","doi-asserted-by":"publisher","DOI":"10.12968\/bjon.2007.16.4.22993"}],"container-title":["Pediatric Dermatology"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.wiley.com\/onlinelibrary\/tdm\/v1\/articles\/10.1111%2Fpde.12258","content-type":"unspecified","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/pde.12258","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,9,23]],"date-time":"2023-09-23T13:09:03Z","timestamp":1695474543000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/pde.12258"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2014,1,23]]},"references-count":18,"journal-issue":{"issue":"2","published-print":{"date-parts":[[2014,3]]}},"alternative-id":["10.1111\/pde.12258"],"URL":"https:\/\/doi.org\/10.1111\/pde.12258","archive":["Portico"],"relation":{},"ISSN":["0736-8046","1525-1470"],"issn-type":[{"value":"0736-8046","type":"print"},{"value":"1525-1470","type":"electronic"}],"subject":[],"published":{"date-parts":[[2014,1,23]]}}}