{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,6,25]],"date-time":"2025-06-25T19:26:03Z","timestamp":1750879563805,"version":"3.40.5"},"reference-count":7,"publisher":"Wiley","issue":"1","license":[{"start":{"date-parts":[[2020,11,23]],"date-time":"2020-11-23T00:00:00Z","timestamp":1606089600000},"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":["Pediatric Dermatology"],"published-print":{"date-parts":[[2021,1]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Background\/Objectives<\/jats:title><jats:p>Patients with rare diseases are challenged when it comes to finding physicians with expertise in their condition. The Foundation for Ichthyosis and Related Skin Types (FIRST) Tele\u2010Ichthyosis program has provided telemedicine for patients and their families with keratinizing disorders since 2009. This study aims to characterize a decade of experience with the program.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>This retrospective cohort study analyzed cases for demographics of patients and the clinicians who submitted their cases, nature of questions asked, number of expert responses, and characteristics of responses. Surveys were sent electronically to all users of the FIRST Tele\u2010Ichthyosis service to assess experiences with the service and solicit constructive recommendations. Descriptive statistics were performed on the case review and responder surveys.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Eighty\u2010eight geographically diverse cases were reviewed showing increased use over time by various specialists for patients of all ages. Sixty\u2010six percent of cases were definitively ichthyosis, and most submitters queried on diagnosis (47%) or treatment (72%). Most submitters described the service as easy to use (66.6%) and advice as timely (61.1%), clear (66.6%), and beneficial (61.1%). All submitters made suggestions for improvement (100%). Experts predominately worked with pediatric populations (70%) and reported self\u2010motivation to volunteer and improve patients\u2019 lives (100%). Experts found technological barriers minor and provided feedback to enhance the service.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>This report highlights how a rare\u2010disease patient advocacy group successfully supports physician collaboration and patient outcomes through secure and efficient telemedicine. Lessons learned are highly relevant in the current healthcare environment.<\/jats:p><\/jats:sec>","DOI":"10.1111\/pde.14460","type":"journal-article","created":{"date-parts":[[2020,11,24]],"date-time":"2020-11-24T08:28:48Z","timestamp":1606206528000},"page":"137-142","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":2,"title":["Use of telemedicine for ichthyosis: Patient advocacy group as conduit to expert physician advice"],"prefix":"10.1111","volume":"38","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-4868-1226","authenticated-orcid":false,"given":"Sarah","family":"Asch","sequence":"first","affiliation":[{"name":"Department of Dermatology HealthPartners and Park Nicollet Medical Groups St. Paul MN USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-5648-3529","authenticated-orcid":false,"given":"Shane M.","family":"Swink","sequence":"additional","affiliation":[{"name":"Division of Dermatology Lehigh Valley Health Network Allentown PA USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1434-6638","authenticated-orcid":false,"given":"Karina L.","family":"Vivar","sequence":"additional","affiliation":[{"name":"Department of Dermatology Northwestern University and Division of Pediatric Dermatology at Ann and Robert H. Lurie Children\u2019s Hospital of Chicago Chicago IL USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jean","family":"Pickford","sequence":"additional","affiliation":[{"name":"Foundation for Ichthyosis and Related Skin Types Colmar PA USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Lisa","family":"Breuning","sequence":"additional","affiliation":[{"name":"Foundation for Ichthyosis and Related Skin Types Colmar PA USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Christine","family":"Wassel","sequence":"additional","affiliation":[{"name":"Foundation for Ichthyosis and Related Skin Types Colmar PA USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-5321-493X","authenticated-orcid":false,"given":"Jennifer L.","family":"Hand","sequence":"additional","affiliation":[{"name":"Departments of Dermatology, Pediatrics and Clinical Genomics Mayo Clinic Rochester MN USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4038-4358","authenticated-orcid":false,"given":"Leonard","family":"Milstone","sequence":"additional","affiliation":[{"name":"Department of Dermatology Yale Medical School New Haven CT USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3289-446X","authenticated-orcid":false,"given":"Leslie","family":"Castelo\u2010Soccio","sequence":"additional","affiliation":[{"name":"Division of Dermatology Children\u2019s Hospital of Philadelphia Philadelphia PA USA"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2020,11,23]]},"reference":[{"key":"e_1_2_10_2_1","doi-asserted-by":"publisher","DOI":"10.1001\/archpedi.159.4.389"},{"key":"e_1_2_10_3_1","doi-asserted-by":"publisher","DOI":"10.1093\/jac\/dkm438"},{"key":"e_1_2_10_4_1","doi-asserted-by":"publisher","DOI":"10.1258\/jtt.2012.gth113"},{"key":"e_1_2_10_5_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.cct.2014.05.005"},{"key":"e_1_2_10_6_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jaad.2020.01.065"},{"key":"e_1_2_10_7_1","doi-asserted-by":"publisher","DOI":"10.1111\/pde.13854"},{"key":"e_1_2_10_8_1","doi-asserted-by":"publisher","DOI":"10.3389\/fpubh.2014.00233"}],"container-title":["Pediatric Dermatology"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/pde.14460","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/full-xml\/10.1111\/pde.14460","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/pde.14460","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,9,2]],"date-time":"2023-09-02T17:31:59Z","timestamp":1693675919000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/pde.14460"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2020,11,23]]},"references-count":7,"journal-issue":{"issue":"1","published-print":{"date-parts":[[2021,1]]}},"alternative-id":["10.1111\/pde.14460"],"URL":"https:\/\/doi.org\/10.1111\/pde.14460","archive":["Portico"],"relation":{},"ISSN":["0736-8046","1525-1470"],"issn-type":[{"type":"print","value":"0736-8046"},{"type":"electronic","value":"1525-1470"}],"subject":[],"published":{"date-parts":[[2020,11,23]]},"assertion":[{"value":"2020-11-23","order":2,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}