{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2023,9,7]],"date-time":"2023-09-07T20:50:54Z","timestamp":1694119854446},"reference-count":36,"publisher":"Wiley","issue":"11","license":[{"start":{"date-parts":[[2020,8,10]],"date-time":"2020-08-10T00:00:00Z","timestamp":1597017600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["J Deutsche Derma Gesell"],"published-print":{"date-parts":[[2020,11]]},"abstract":"<jats:title>Summary<\/jats:title><jats:p>The care of patients with epidermolysis bullosa (EB) poses a major challenge due to the rarity, heterogeneity and complexity of the disease as well as the occurrence of numerous primary and secondary extracutaneous manifestations, causing a significant morbidity and mortality. Specialized treatment centers are essential for offering these patients adequate care, including individual, interdisciplinary coordinated treatments according to current medical standards, and access to innovative therapeutic options. Against this background, the EB House Austria was founded in 2005 and designated the first national center of expertise for genodermatoses with a focus on EB in 2017. In the same year, it became a member of the European Reference Network for Rare Skin Diseases (ERN Skin). The pillars of this institution (outpatient clinic, research unit, academy, clinical study center) interact closely with each other, with numerous national and international clinical and scientific partners, as well as with patients and their relatives via the DEBRA Austria patient group. The development of the EB House Austria as a reference center is characterized by a long\u2010term pioneering work, which in turn could pave the way for the optimization of care for comparable diseases as well as general care structures.<\/jats:p>","DOI":"10.1111\/ddg.14187","type":"journal-article","created":{"date-parts":[[2020,8,10]],"date-time":"2020-08-10T20:46:21Z","timestamp":1597092381000},"page":"1229-1235","update-policy":"http:\/\/dx.doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":3,"title":["EB (epidermolysis bullosa)\u2010House Austria: Pioneering work for the care of patients with rare diseases"],"prefix":"10.1111","volume":"18","author":[{"given":"Christine","family":"Prodinger","sequence":"first","affiliation":[{"name":"Department of Dermatology and Allergology Paracelsus Private Medical University  Salzburg Austria"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Martin","family":"Laimer","sequence":"additional","affiliation":[{"name":"Department of Dermatology and Allergology Paracelsus Private Medical University  Salzburg Austria"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Johann W.","family":"Bauer","sequence":"additional","affiliation":[{"name":"Department of Dermatology and Allergology Paracelsus Private Medical University  Salzburg Austria"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Helmut","family":"Hintner","sequence":"additional","affiliation":[{"name":"Department of Dermatology and Allergology Paracelsus Private Medical University  Salzburg Austria"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2020,8,10]]},"reference":[{"key":"e_1_2_9_2_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jaad.2014.01.903"},{"key":"e_1_2_9_3_1","doi-asserted-by":"publisher","DOI":"10.1111\/ddg.40_12774"},{"key":"e_1_2_9_4_1","article-title":"Life with epidermolysis bullosa (EB): etiology, diagnosis, multidisciplinary care and therapy","author":"Fine JD","year":"2008","journal-title":"Wien: Springer"},{"key":"e_1_2_9_5_1","doi-asserted-by":"publisher","DOI":"10.1111\/bjd.18921"},{"key":"e_1_2_9_6_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jaad.2009.03.052"},{"key":"e_1_2_9_7_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jaad.2009.03.053"},{"key":"e_1_2_9_8_1","first-page":"1","article-title":"Epidermolysis bullosa: part I \u2013 pathogenesis and clinical features","volume":"28","author":"Murrell D","year":"2010","journal-title":"Dermatologic Clinics"},{"key":"e_1_2_9_9_1","doi-asserted-by":"publisher","DOI":"10.1111\/1523-1747.ep12541715"},{"key":"e_1_2_9_10_1","doi-asserted-by":"publisher","DOI":"10.1001\/archderm.1982.01650180009008"},{"key":"e_1_2_9_11_1","doi-asserted-by":"publisher","DOI":"10.1111\/1523-1747.ep12525447"},{"issue":"2","key":"e_1_2_9_12_1","first-page":"127","article-title":"Role of immunofluorescence microscopy in dermatology","volume":"146","author":"Pohla\u2010Gubo G","year":"2011","journal-title":"G Ital Dermatol Venereol"},{"key":"e_1_2_9_13_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.det.2009.12.005"},{"key":"e_1_2_9_14_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.det.2010.02.008"},{"key":"e_1_2_9_15_1","unstructured":"EUCERD Recommendations on Quality Criteria for Centres of Expertise for RD in MS. Oct 2011. Available fromwww.eucerd.eu[Last accessed December 14 2019]."},{"key":"e_1_2_9_16_1","unstructured":"EUCERD Recommendations on European reference networks for RD. Jan. 2013. Available fromwww.eucerd.eu[Last accessed December 14 2019]."},{"key":"e_1_2_9_17_1","unstructured":"EUCERD Recommendations on Core Indicators for RD National Plans\/Strategies. Jun. 2013. Available fromwww.eucerd.eu[Last accessed December 14 2019]."},{"key":"e_1_2_9_18_1","unstructured":"EUROPLAN Recommendations for the Development of National Plans for Rare Diseases. Guidance Document. Available fromwww.europlanproject.eu[Last accessed December 14 2019]."},{"key":"e_1_2_9_19_1","doi-asserted-by":"publisher","DOI":"10.1007\/s00508-016-1133-3"},{"key":"e_1_2_9_20_1","doi-asserted-by":"publisher","DOI":"10.1111\/ddg.12604"},{"key":"e_1_2_9_21_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmjopen-2017-021161"},{"key":"e_1_2_9_22_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.det.2009.10.024"},{"key":"e_1_2_9_23_1","doi-asserted-by":"publisher","DOI":"10.1067\/mjd.2001.112217"},{"key":"e_1_2_9_24_1","unstructured":"EB\u2010Handbuch. Available fromhttps:\/\/www.eb\u2010haus.org\/eb\u2010handbuch[Last accessed December 15 2019]."},{"key":"e_1_2_9_25_1","unstructured":"EUCERD.Working document: Minimal Data Set for Rare Diseases Registries (January 2015). Available fromhttp:\/\/www.eucerd.eu\/wp\u2010content\/uploads\/\/2015\/03\/WP8_Registries_MDS.pdf[Last accessed December 15 2019]."},{"key":"e_1_2_9_26_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jid.2018.04.026"},{"key":"e_1_2_9_27_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.omtn.2019.09.011"},{"key":"e_1_2_9_28_1","doi-asserted-by":"publisher","DOI":"10.1111\/bjd.18319"},{"key":"e_1_2_9_29_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jid.2017.11.022"},{"key":"e_1_2_9_30_1","article-title":"A novel humanized mouse model to study the function of human cutaneous memory T cells in vivo in human skin","volume":"490060","author":"Klicznik MM","journal-title":"bioRxiv"},{"key":"e_1_2_9_31_1","doi-asserted-by":"publisher","DOI":"10.1038\/nm1504"},{"key":"e_1_2_9_32_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jid.2016.10.038"},{"key":"e_1_2_9_33_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.stemcr.2013.11.001"},{"key":"e_1_2_9_34_1","doi-asserted-by":"publisher","DOI":"10.1038\/nature24487"},{"key":"e_1_2_9_35_1","doi-asserted-by":"publisher","DOI":"10.1186\/1750-1172-8-69"},{"key":"e_1_2_9_36_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jaad.2018.01.019"},{"key":"e_1_2_9_37_1","doi-asserted-by":"publisher","DOI":"10.1038\/s41598-018-31823-6"}],"container-title":["JDDG: Journal der Deutschen Dermatologischen Gesellschaft"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.wiley.com\/onlinelibrary\/tdm\/v1\/articles\/10.1111%2Fddg.14187","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/ddg.14187","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/full-xml\/10.1111\/ddg.14187","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/ddg.14187","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,9,5]],"date-time":"2023-09-05T00:04:11Z","timestamp":1693872251000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/ddg.14187"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2020,8,10]]},"references-count":36,"journal-issue":{"issue":"11","published-print":{"date-parts":[[2020,11]]}},"alternative-id":["10.1111\/ddg.14187"],"URL":"https:\/\/doi.org\/10.1111\/ddg.14187","archive":["Portico"],"relation":{},"ISSN":["1610-0379","1610-0387"],"issn-type":[{"value":"1610-0379","type":"print"},{"value":"1610-0387","type":"electronic"}],"subject":[],"published":{"date-parts":[[2020,8,10]]},"assertion":[{"value":"2020-01-25","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2020-04-14","order":1,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2020-08-10","order":2,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}