{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,30]],"date-time":"2026-09-30T20:02:16Z","timestamp":1790798536176,"version":"4.1.0"},"reference-count":27,"publisher":"Wiley","license":[{"start":{"date-parts":[[2026,9,30]],"date-time":"2026-09-30T00:00:00Z","timestamp":1790726400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"},{"start":{"date-parts":[[2026,9,30]],"date-time":"2026-09-30T00:00:00Z","timestamp":1790726400000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"funder":[{"DOI":"10.13039\/501100000780","name":"European Commission","doi-asserted-by":"publisher","award":["Project 101155994\u2010ERN\u2010RND_23\u201027"],"award-info":[{"award-number":["Project 101155994\u2010ERN\u2010RND_23\u201027"]}],"id":[{"id":"10.13039\/501100000780","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Develop Med Child Neuro"],"abstract":"<jats:sec>\n                    <jats:title>Aim<\/jats:title>\n                    <jats:p>To produce recommendations for specific neurological diseases, including ataxias, hereditary spastic paraplegias, leukodystrophies, dystonias, and choreas.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Method<\/jats:title>\n                    <jats:p>Our study consisted of two related phases. First, we conducted a scoping review to identify essential elements of transitional care models. These elements were included in a questionnaire that was subsequently evaluated by an international group of experts using a modified web\u2010based Delphi consensus process. Results were analysed according to the RAND\/UCLA methodology.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>\n                      Fifty\u2010nine statements of transitional care were evaluated by 47 health care specialists from 12 countries. Panellists were experts in ataxias (\n                      <jats:italic>n<\/jats:italic>\n                      \u00a0=\u00a012), hereditary spastic paraplegias (\n                      <jats:italic>n<\/jats:italic>\n                      \u00a0=\u00a010), leukodystrophies (\n                      <jats:italic>n<\/jats:italic>\n                      \u00a0=\u00a09), choreas (\n                      <jats:italic>n<\/jats:italic>\n                      \u00a0=\u00a07), and dystonias (\n                      <jats:italic>n<\/jats:italic>\n                      \u00a0=\u00a09). Seventeen recommendations met consensus in all five disease categories.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Interpretation<\/jats:title>\n                    <jats:p>Child\u2010to\u2010adult transition has been investigated in many fields of medicine; however, only few reports have considered rare neurological disorders. The transition working group of the European Reference Network for Rare Neurological Diseases has proposed a collaborative effort to produce recommendations for specific neurological diseases. The recommendations identified in our study reflect areas of shared priorities across multiple disease groups of rare neurological diseases and provide an essential level of guidance to support clinicians and families in promoting consistent transition projects of care across centres with different health care systems.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/dmcn.70499","type":"journal-article","created":{"date-parts":[[2026,9,30]],"date-time":"2026-09-30T19:36:50Z","timestamp":1790797010000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["International recommendations for child to adult care transition in rare neurological diseases: A scoping review and Delphi consensus study"],"prefix":"10.1111","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-0646-0262","authenticated-orcid":false,"given":"Lucie","family":"Stovickova","sequence":"first","affiliation":[{"name":"Centre of Hereditary Ataxias, Department of Paediatric Neurology, Second Faculty of Medicine Charles University  Prague Czech Republic"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Riccardo","family":"Ronco","sequence":"additional","affiliation":[{"name":"Unit of Medical Genetics and Neurogenetics Fondazione IRCCS Istituto Neurologico Carlo Besta  Milan Italy"},{"name":"Department of Health Sciences University of Milan  Milan Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sylvia","family":"Boesch","sequence":"additional","affiliation":[{"name":"Center for Rare Movement Disorders Innsbruck, Department of Neurology Medical University of Innsbruck  Innsbruck Austria"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Enrico","family":"Bertini","sequence":"additional","affiliation":[{"name":"Research Unit of Neuromuscular and Neurodegenerative Disease Bambino Ges\u00f9 Children's Hospital, IRCCS  Rome Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mary","family":"Kearney","sequence":"additional","affiliation":[{"name":"National Ataxia Centre, Department of Neurology Tallaght University Hospital  Dublin Ireland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lidia","family":"Sarro","sequence":"additional","affiliation":[{"name":"Unit of Medical Genetics and Neurogenetics Fondazione IRCCS Istituto Neurologico Carlo Besta  Milan Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6320-2641","authenticated-orcid":false,"given":"Juan Dar\u00edo","family":"Ortigoza\u2010Escobar","sequence":"additional","affiliation":[{"name":"Movement Disorders Unit, Pediatric Neurology Department Institut de Recerca, Hospital Sant Joan de D\u00e9u Barcelona  Barcelona Spain"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sophie","family":"Ripp","sequence":"additional","affiliation":[{"name":"Centre for Rare Diseases and Institute of Medical Genetics and Applied Genomics University Hospital T\u00fcbingen  T\u00fcbingen Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2405-3564","authenticated-orcid":false,"given":"Caterina","family":"Mariotti","sequence":"additional","affiliation":[{"name":"Unit of Medical Genetics and Neurogenetics Fondazione IRCCS Istituto Neurologico Carlo Besta  Milan Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"name":"the ERN\u2010RND Working Group for the Management of Transition","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2026,9,30]]},"reference":[{"key":"e_1_2_10_2_1","doi-asserted-by":"publisher","DOI":"10.1016\/S1054\u2010139X(03)00208\u20108"},{"key":"e_1_2_10_3_1","doi-asserted-by":"crossref","first-page":"1304","DOI":"10.1542\/peds.110.S3.1304","article-title":"American Academy of Family Physicians, American College of Physicians\u2010American Society of Internal Medicine. 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