{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,2,27]],"date-time":"2026-02-27T02:54:45Z","timestamp":1772160885380,"version":"3.50.1"},"reference-count":23,"publisher":"Wiley","issue":"1","license":[{"start":{"date-parts":[[2014,3,20]],"date-time":"2014-03-20T00:00:00Z","timestamp":1395273600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"DOI":"10.13039\/100007475","name":"Canadian Demrmatology Foundation","doi-asserted-by":"crossref","id":[{"id":"10.13039\/100007475","id-type":"DOI","asserted-by":"crossref"}]},{"name":"The Hospital for Sick Children Innovation Grant"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Pediatric Dermatology"],"published-print":{"date-parts":[[2015,1]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:p>\n                    Epidermolysis bullosa (\n                    <jats:styled-content style=\"fixed-case\">EB<\/jats:styled-content>\n                    ) is a genetic condition characterized by skin fragility and blistering. There is no instrument available for clinical outcome research measurements. Our aim was to develop a comprehensive instrument that is easy to use in the context of interventional studies. Item collection was accomplished using a two\u2010step Delphi Internet survey process for practitioners and qualitative content analysis of patient and family interviews. Items were reduced based on frequency and importance using a 4\u2010point Likert scale and were subject to consensus (&gt;80% agreement) using the nominal group technique. Pilot data testing was performed in 21 consecutive patients attending an\n                    <jats:styled-content style=\"fixed-case\">EB<\/jats:styled-content>\n                    clinic. The final score, Instrument for Scoring Clinical Outcome of Research for Epidermolysis Bullosa (iscor\n                    <jats:styled-content style=\"fixed-case\">EB<\/jats:styled-content>\n                    ), is a combined score that contains clinician items grouped in five domains (skin, mucosa, organ involvement, laboratory abnormalities, and complications and procedures; maximum score 114) and patient\u2010derived items (pain, itch, functional limitations, sleep, mood, and effect on daily and leisurely activities; maximum score 120). Pilot testing revealed that combined (see below) and subscores were able to differentiate between\n                    <jats:styled-content style=\"fixed-case\">EB<\/jats:styled-content>\n                    subtypes and degrees of clinical severity (\n                    <jats:styled-content style=\"fixed-case\">EB<\/jats:styled-content>\n                    simplex 21.7\u00a0\u00b1\u00a016.5, junctional\n                    <jats:styled-content style=\"fixed-case\">EB<\/jats:styled-content>\n                    28.0\u00a0\u00b1\u00a020.7, dystrophic\n                    <jats:styled-content style=\"fixed-case\">EB<\/jats:styled-content>\n                    57.3\u00a0\u00b1\u00a024.6, p\u00a0=\u00a00.007; mild 17.3\u00a0\u00b1\u00a09.6, moderate 41.0\u00a0\u00b1\u00a019.4, and severe 64.5\u00a0\u00b1\u00a022.6, p\u00a0&lt;\u00a00.001). There was high correlation between clinician and patient subscores (correlation coefficient\u00a0=\u00a00.79, p\u00a0&lt;\u00a00.001). iscor\n                    <jats:styled-content style=\"fixed-case\">EB<\/jats:styled-content>\n                    seems to be a sensitive tool in differentiating between\n                    <jats:styled-content style=\"fixed-case\">EB<\/jats:styled-content>\n                    types and across the clinical spectrum of severity. Further validation studies are needed.\n                  <\/jats:p>","DOI":"10.1111\/pde.12317","type":"journal-article","created":{"date-parts":[[2014,3,20]],"date-time":"2014-03-20T23:26:38Z","timestamp":1395357998000},"page":"41-52","source":"Crossref","is-referenced-by-count":33,"title":["Instrument for Scoring Clinical Outcome of Research for Epidermolysis Bullosa: A Consensus\u2010Generated Clinical Research Tool"],"prefix":"10.1111","volume":"32","author":[{"given":"Agnes","family":"Schwieger\u2010Briel","sequence":"first","affiliation":[{"name":"Department of Dermatology University Freiburg Medical Centre Freiburg Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Ajith","family":"Chakkittakandiyil","sequence":"additional","affiliation":[{"name":"Department of Paediatrics Hospital for Sick Children Toronto Ontario 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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"}]},{"given":"Elena","family":"Pope","sequence":"additional","affiliation":[{"name":"Department of Paediatrics Hospital for Sick Children Toronto Ontario 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