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dc.contributor.authorNeale, Holly
dc.contributor.authorSchrandt, Suz
dc.contributor.authorAbbott, Becky M
dc.contributor.authorAustin, Jennifer
dc.contributor.authorBrand, Callista
dc.contributor.authorCamp, Karen
dc.contributor.authorDevenport, Katherine
dc.contributor.authorHall, Michelle
dc.contributor.authorIsbell, Lauren
dc.contributor.authorMiciano, Charlene
dc.contributor.authorPry, Sarah
dc.contributor.authorQuinn, Paula
dc.contributor.authorRittle, James
dc.contributor.authorTenconi, Francesca
dc.contributor.authorTerrell, Julia
dc.contributor.authorWeiss, Meredith
dc.contributor.authorZavitz, Sam
dc.contributor.authorSiegel, Michael
dc.date.accessioned2024-03-27T19:33:57Z
dc.date.available2024-03-27T19:33:57Z
dc.date.issued2022-11-28
dc.identifier.citationNeale H, Schrandt S, Abbott BM, Austin J, Brand C, Camp K, Devenport K, Hall M, Isbell L, Miciano C, Pry S, Quinn P, Rittle J, Tenconi F, Terrell J, Weiss M, Zavitz S, Siegel M. Defining patient-centered research priorities in pediatric dermatology. Pediatr Dermatol. 2023 Mar;40(2):250-257. doi: 10.1111/pde.15199. Epub 2022 Nov 28. PMID: 36443263.en_US
dc.identifier.eissn1525-1470
dc.identifier.doi10.1111/pde.15199en_US
dc.identifier.pmid36443263
dc.identifier.urihttp://hdl.handle.net/20.500.14038/53240
dc.description.abstractBackground/objectives: 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-building process to identify comprehensive, high-priority research needs. Methods: 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. Results: 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-Weber 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. Conclusions: Many pediatric dermatology research priorities align across affected communities and may drive meaningful, patient-centric initiatives and investigations.en_US
dc.language.isoenen_US
dc.relation.ispartofPediatric Dermatologyen_US
dc.relation.urlhttps://doi.org/10.1111/pde.15199en_US
dc.rightsThis is an open access article under the terms of the Creative Commons Attribution-NonCommercial License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited and is not used for commercial purposes. © 2022 The Authors. Pediatric Dermatology published by Wiley Periodicals LLCen_US
dc.rightsAttribution-NonCommercial 4.0 International*
dc.rights.urihttp://creativecommons.org/licenses/by-nc/4.0/*
dc.subjectdermatologyen_US
dc.subjecthealth care navigationen_US
dc.subjectpatient-centereden_US
dc.subjectpediatricen_US
dc.subjectprioritiesen_US
dc.subjectpsychosocialen_US
dc.subjectquality of lifeen_US
dc.titleDefining patient-centered research priorities in pediatric dermatologyen_US
dc.typeJournal Articleen_US
dc.source.journaltitlePediatric dermatology
dc.source.volume40
dc.source.issue2
dc.source.beginpage250
dc.source.endpage257
dc.source.countryUnited States
dc.source.countryUnited States
dc.identifier.journalPediatric dermatology
refterms.dateFOA2024-03-27T19:33:58Z
dc.contributor.departmentDermatologyen_US


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This is an open access article under the terms of the Creative Commons Attribution-NonCommercial License, which permits use, distribution and reproduction in any
medium, provided the original work is properly cited and is not used for commercial purposes.
© 2022 The Authors. Pediatric Dermatology published by Wiley Periodicals LLC
Except where otherwise noted, this item's license is described as This is an open access article under the terms of the Creative Commons Attribution-NonCommercial License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited and is not used for commercial purposes. © 2022 The Authors. Pediatric Dermatology published by Wiley Periodicals LLC