{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,3,17]],"date-time":"2026-03-17T20:48:36Z","timestamp":1773780516594,"version":"3.50.1"},"reference-count":25,"publisher":"Wiley","issue":"2","license":[{"start":{"date-parts":[[2022,11,28]],"date-time":"2022-11-28T00:00:00Z","timestamp":1669593600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Pediatric Dermatology"],"published-print":{"date-parts":[[2023,3]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Background\/Objectives<\/jats:title><jats:p>Patient and caregiver perspectives are critical in understanding dermatologic disease impact, presentation, and management in children. The Pediatric Dermatology Research Alliance (PeDRA) Patient Advisory Committee (PtAC), a group of patient representatives and parents of children with cutaneous disease, pursued a multistep, iterative, consensus\u2010building process to identify comprehensive, high\u2010priority research needs.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>Building on discussions at the 2020 PeDRA Annual Conference, a research prioritization survey was developed and completed by PtAC members. Survey themes were aggregated and workshopped by the PtAC through a series of facilitated calls. Emerging priorities were refined in collaboration with additional PeDRA patient community members at the 2021 PeDRA Annual Conference. Subsequently, a final actionable list was agreed upon.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Fourteen PtAC members (86.7% female) representing patients with alopecia areata, atopic dermatitis, vascular birthmarks, congenital melanocytic nevi, ectodermal dysplasias, epidermolysis bullosa, Gorlin syndrome, hidradenitis suppurativa, ichthyosis, pemphigus, psoriasis, Sturge\u2013Weber syndrome, and pachyonychia congenita completed the survey. Following serial PtAC meetings, 60 research needs were identified from five domains: psychosocial challenges, health care navigation\/disease management, causes\/triggers, treatments to preserve or save life, and treatments to preserve or save quality of life.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>Many pediatric dermatology research priorities align across affected communities and may drive meaningful, patient\u2010centric initiatives and investigations.<\/jats:p><\/jats:sec>","DOI":"10.1111\/pde.15199","type":"journal-article","created":{"date-parts":[[2022,11,29]],"date-time":"2022-11-29T07:10:17Z","timestamp":1669705817000},"page":"250-257","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":4,"title":["Defining patient\u2010centered research priorities in pediatric dermatology"],"prefix":"10.1111","volume":"40","author":[{"given":"Holly","family":"Neale","sequence":"first","affiliation":[{"name":"Pediatric Dermatology Research Alliance  Portland Oregon USA"},{"name":"University of Massachusetts Chan Medical School  Worcester Massachusetts USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Suz","family":"Schrandt","sequence":"additional","affiliation":[{"name":"ExPPect, LLC  USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Becky M.","family":"Abbott","sequence":"additional","affiliation":[{"name":"Pediatric Dermatology Research Alliance Patient Advisory Committee (PeDRA\u2010PtAC)  Portland Oregon USA"},{"name":"National Foundation for Ectodermal Dysplasias  Fairview Heights Illinois USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jennifer","family":"Austin","sequence":"additional","affiliation":[{"name":"Pediatric Dermatology Research Alliance Patient Advisory Committee (PeDRA\u2010PtAC)  Portland Oregon USA"},{"name":"International Alliance of Dermatology Patient Organizations  Ottawa Ontario Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Callista","family":"Brand","sequence":"additional","affiliation":[{"name":"Pediatric Dermatology Research Alliance Patient Advisory Committee (PeDRA\u2010PtAC)  Portland Oregon USA"},{"name":"HS Foundation  Santa Monica California USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Karen","family":"Camp","sequence":"additional","affiliation":[{"name":"Pediatric Dermatology Research Alliance Patient Advisory Committee (PeDRA\u2010PtAC)  Portland Oregon USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Katherine","family":"Devenport","sequence":"additional","affiliation":[{"name":"Pediatric Dermatology Research Alliance  Portland Oregon USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Michelle","family":"Hall","sequence":"additional","affiliation":[{"name":"Pediatric Dermatology Research Alliance Patient Advisory Committee (PeDRA\u2010PtAC)  Portland Oregon USA"},{"name":"EB Research Partnership  New York New York USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Lauren","family":"Isbell","sequence":"additional","affiliation":[{"name":"Pediatric Dermatology Research Alliance Patient Advisory Committee (PeDRA\u2010PtAC)  Portland Oregon USA"},{"name":"Nevus Outreach  Jonesboro Arkansas USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Charlene","family":"Miciano","sequence":"additional","affiliation":[{"name":"Pediatric Dermatology Research Alliance Patient Advisory Committee (PeDRA\u2010PtAC)  Portland Oregon USA"},{"name":"National Eczema Association  San Rafael California USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Sarah","family":"Pry","sequence":"additional","affiliation":[{"name":"Pediatric Dermatology Research Alliance Patient Advisory Committee (PeDRA\u2010PtAC)  Portland Oregon USA"},{"name":"Global Parents for Eczema Research  Santa Barbara California USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Paula","family":"Quinn","sequence":"additional","affiliation":[{"name":"Pediatric Dermatology Research Alliance Patient Advisory Committee (PeDRA\u2010PtAC)  Portland Oregon USA"},{"name":"National Alopecia Areata Foundation  San Rafael California USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"James","family":"Rittle","sequence":"additional","affiliation":[{"name":"Pediatric Dermatology Research Alliance Patient Advisory Committee (PeDRA\u2010PtAC)  Portland Oregon USA"},{"name":"Pachyonychia Congenita Project  Holladay Utah USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Francesca","family":"Tenconi","sequence":"additional","affiliation":[{"name":"Pediatric Dermatology Research Alliance Patient Advisory Committee (PeDRA\u2010PtAC)  Portland Oregon USA"},{"name":"Children's Skin Disease Foundation  Walnut Creek California USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Julia","family":"Terrell","sequence":"additional","affiliation":[{"name":"Pediatric Dermatology Research Alliance Patient Advisory Committee (PeDRA\u2010PtAC)  Portland Oregon USA"},{"name":"The Sturge\u2010Weber Foundation  Randolph New Jersey USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Meredith","family":"Weiss","sequence":"additional","affiliation":[{"name":"Pediatric Dermatology Research Alliance Patient Advisory Committee (PeDRA\u2010PtAC)  Portland Oregon USA"},{"name":"Gorlin Syndrome Alliance  Reading Pennsylvania USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Sam","family":"Zavitz","sequence":"additional","affiliation":[{"name":"Pediatric Dermatology Research Alliance Patient Advisory Committee (PeDRA\u2010PtAC)  Portland Oregon USA"},{"name":"Foundation for Ichthyosis and Related Skin Types  Colmar Pennsylvania USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Michael","family":"Siegel","sequence":"additional","affiliation":[{"name":"Pediatric Dermatology Research Alliance  Portland Oregon USA"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2022,11,28]]},"reference":[{"key":"e_1_2_8_2_1","doi-asserted-by":"publisher","DOI":"10.1016\/J.JAAD.2005.04.033"},{"key":"e_1_2_8_3_1","doi-asserted-by":"publisher","DOI":"10.1016\/J.JDIN.2021.07.003"},{"key":"e_1_2_8_4_1","doi-asserted-by":"publisher","DOI":"10.1684\/EJD.2008.0384"},{"key":"e_1_2_8_5_1","doi-asserted-by":"publisher","DOI":"10.1111\/BJD.15853"},{"key":"e_1_2_8_6_1","doi-asserted-by":"publisher","DOI":"10.1111\/PDE.14618"},{"key":"e_1_2_8_7_1","doi-asserted-by":"publisher","DOI":"10.1111\/BJD.20437"},{"key":"e_1_2_8_8_1","doi-asserted-by":"publisher","DOI":"10.1111\/PDE.13871"},{"key":"e_1_2_8_9_1","doi-asserted-by":"publisher","DOI":"10.1111\/BJD.14022"},{"key":"e_1_2_8_10_1","doi-asserted-by":"publisher","DOI":"10.1111\/BJD.19874"},{"key":"e_1_2_8_11_1","doi-asserted-by":"publisher","DOI":"10.1186\/S13063\u2010016\u20101765\u20107"},{"key":"e_1_2_8_12_1","doi-asserted-by":"publisher","DOI":"10.1001\/JAMADERMATOL.2020.5839"},{"key":"e_1_2_8_13_1","unstructured":"Patient Advisory Committee. Accessed February 1 2022.https:\/\/pedraresearch.org\/patient-advisory-committee\/"},{"key":"e_1_2_8_14_1","doi-asserted-by":"publisher","DOI":"10.3390\/IJERPH19010291"},{"key":"e_1_2_8_15_1","doi-asserted-by":"publisher","DOI":"10.1016\/J.IJWD.2017.11.002"},{"key":"e_1_2_8_16_1","doi-asserted-by":"publisher","DOI":"10.3390\/CHILDREN8111057"},{"key":"e_1_2_8_17_1","doi-asserted-by":"publisher","DOI":"10.1111\/J.1525\u20101470.2007.00407.X"},{"key":"e_1_2_8_18_1","doi-asserted-by":"publisher","DOI":"10.1111\/pde.13176"},{"key":"e_1_2_8_19_1","doi-asserted-by":"publisher","DOI":"10.1111\/PDE.14748"},{"key":"e_1_2_8_20_1","doi-asserted-by":"publisher","DOI":"10.1111\/pde.13943"},{"key":"e_1_2_8_21_1","doi-asserted-by":"publisher","DOI":"10.1016\/J.JAAD.2021.11.038"},{"key":"e_1_2_8_22_1","doi-asserted-by":"publisher","DOI":"10.1186\/1750\u20101172\u20109\u201076"},{"key":"e_1_2_8_23_1","doi-asserted-by":"publisher","DOI":"10.1111\/BJD.20700"},{"key":"e_1_2_8_24_1","doi-asserted-by":"publisher","DOI":"10.1542\/PEDS.2021\u2010051536"},{"key":"e_1_2_8_25_1","doi-asserted-by":"publisher","DOI":"10.1111\/JDV.13248"},{"key":"e_1_2_8_26_1","doi-asserted-by":"publisher","DOI":"10.1097\/JNN.0000000000000502"}],"container-title":["Pediatric Dermatology"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/pde.15199","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/full-xml\/10.1111\/pde.15199","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/pde.15199","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,8,20]],"date-time":"2023-08-20T23:28:55Z","timestamp":1692574135000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/pde.15199"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2022,11,28]]},"references-count":25,"journal-issue":{"issue":"2","published-print":{"date-parts":[[2023,3]]}},"alternative-id":["10.1111\/pde.15199"],"URL":"https:\/\/doi.org\/10.1111\/pde.15199","archive":["Portico"],"relation":{},"ISSN":["0736-8046","1525-1470"],"issn-type":[{"value":"0736-8046","type":"print"},{"value":"1525-1470","type":"electronic"}],"subject":[],"published":{"date-parts":[[2022,11,28]]},"assertion":[{"value":"2022-06-07","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2022-11-03","order":1,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2022-11-28","order":2,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}