{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,30]],"date-time":"2026-09-30T21:46:35Z","timestamp":1790804795644,"version":"4.1.0"},"reference-count":33,"publisher":"Informa UK Limited","license":[{"start":{"date-parts":[[2025,6,1]],"date-time":"2025-06-01T00:00:00Z","timestamp":1748736000000},"content-version":"unspecified","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc\/3.0\/"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["PROM"],"DOI":"10.2147\/prom.s517362","type":"journal-article","created":{"date-parts":[[2025,6,26]],"date-time":"2025-06-26T08:25:12Z","timestamp":1750926312000},"page":"93-103","source":"Crossref","is-referenced-by-count":4,"title":["Agreement Between Child Self- and Parent Proxy-Reports of Health-Related Quality of Life in Spinal Muscular Atrophy: Preliminary Insights from a Nationwide Patient Registry in Germany"],"prefix":"10.1080","volume":"Volume 16","author":[{"given":"Erik","family":"Landfeldt","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Berenike","family":"Leibrock","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Justine","family":"Hussong","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Simone","family":"Thiele","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7611-4827","authenticated-orcid":true,"given":"Maggie","family":"Walter","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Eva","family":"Moehler","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9528-7419","authenticated-orcid":true,"given":"Michael","family":"Zemlin","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ulrich","family":"Dillmann","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marina","family":"Flotats-Bastardas","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"301","published-online":{"date-parts":[[2025,6]]},"reference":[{"key":"ref1","doi-asserted-by":"crossref","first-page":"2120","DOI":"10.1016\/S0140-6736(08)60921-6","volume":"371","author":"Lunn","year":"2008","journal-title":"Lancet"},{"key":"ref2","doi-asserted-by":"crossref","first-page":"443","DOI":"10.1016\/S1474-4422(12)70061-3","volume":"11","author":"Mercuri","year":"2012","journal-title":"Lancet Neurol"},{"key":"ref3","doi-asserted-by":"crossref","first-page":"668","DOI":"10.1093\/brain\/awac252","volume":"146","author":"Pechmann","year":"2023","journal-title":"Brain"},{"key":"ref4","doi-asserted-by":"crossref","first-page":"384","DOI":"10.1186\/s13023-022-02547-8","volume":"17","author":"Pechmann","year":"2022","journal-title":"Orphanet J Rare Dis"},{"key":"ref5","doi-asserted-by":"crossref","first-page":"1","DOI":"10.3310\/hta5040","volume":"5","author":"Eiser","year":"2001","journal-title":"Health Technol Assess"},{"key":"ref6","doi-asserted-by":"crossref","first-page":"175","DOI":"10.1093\/jpepsy\/21.2.175","volume":"21","author":"Spieth","year":"1996","journal-title":"J Pediatr Psychol"},{"key":"ref7","doi-asserted-by":"crossref","first-page":"805","DOI":"10.1016\/j.nmd.2009.09.009","volume":"19","author":"Iannaccone","year":"2009","journal-title":"Neuromuscul Disord"},{"key":"ref8","doi-asserted-by":"crossref","first-page":"791","DOI":"10.1007\/s11136-013-0428-3","volume":"23","author":"Ravens-Sieberer","year":"2014","journal-title":"Qual Life Res"},{"key":"ref9","doi-asserted-by":"crossref","first-page":"e1129","DOI":"10.1542\/peds.2014-0352","volume":"134","author":"Jardine","year":"2014","journal-title":"Pediatrics"},{"key":"ref10","doi-asserted-by":"crossref","first-page":"1199","DOI":"10.2165\/00019053-200624120-00005","volume":"24","author":"Ravens-Sieberer","year":"2006","journal-title":"Pharmacoeconomics"},{"key":"ref11","doi-asserted-by":"publisher","first-page":"1188","DOI":"10.1177\/0883073809357624","volume":"25","author":"Bray","year":"2010","journal-title":"J Child Neurol"},{"key":"ref12","doi-asserted-by":"crossref","first-page":"97","DOI":"10.1097\/CND.0b013e3181c5053b","volume":"11","author":"Davis","year":"2010","journal-title":"J Clin Neuromuscul Dis"},{"key":"ref13","doi-asserted-by":"publisher","first-page":"e1559","DOI":"10.1542\/peds.2012-0858","volume":"130","author":"Uzark","year":"2012","journal-title":"Pediatrics"},{"key":"ref14","doi-asserted-by":"publisher","first-page":"47","DOI":"10.1186\/1477-7525-11-47","volume":"11","author":"Hu","year":"2013","journal-title":"Health Qual Life Outcomes"},{"key":"ref15","doi-asserted-by":"publisher","first-page":"1945","DOI":"10.1007\/s11136-014-0642-7","volume":"23","author":"Lim","year":"2014","journal-title":"Qual Life Res"},{"key":"ref16","doi-asserted-by":"crossref","first-page":"32","DOI":"10.1186\/s13023-023-02639-z","volume":"18","author":"Leibrock","year":"2023","journal-title":"Orphanet J Rare Dis"},{"key":"ref17","doi-asserted-by":"crossref","first-page":"117","DOI":"10.3233\/JND-230071","volume":"11","author":"Landfeldt","year":"2024","journal-title":"J Neuromuscul Dis"},{"key":"ref18","doi-asserted-by":"publisher","DOI":"10.1007\/s11136-024-03665-5","author":"Landfeldt","year":"2024","journal-title":"Qual Life Res"},{"key":"ref19","doi-asserted-by":"crossref","first-page":"54","DOI":"10.1186\/1477-7525-1-54","volume":"1","author":"Horsman","year":"2003","journal-title":"Health Qual Life Outcomes"},{"key":"ref20","doi-asserted-by":"crossref","first-page":"347","DOI":"10.1016\/j.ejpn.2019.03.004","volume":"23","author":"Landfeldt","year":"2019","journal-title":"Eur J Paediatr Neurol"},{"key":"ref21","doi-asserted-by":"crossref","first-page":"120545","DOI":"10.1016\/j.jns.2023.120545","volume":"446","author":"Landfeldt","year":"2023","journal-title":"J Neurol Sci"},{"key":"ref22","doi-asserted-by":"crossref","first-page":"113","DOI":"10.1097\/00005650-200202000-00006","volume":"40","author":"Feeny","year":"2002","journal-title":"Medical Care"},{"key":"ref23","first-page":"360","volume":"37","author":"Viera","year":"2005","journal-title":"Fam Med"},{"key":"ref24","doi-asserted-by":"crossref","first-page":"159","DOI":"10.2307\/2529310","volume":"33","author":"Landis","year":"1977","journal-title":"Biometrics"},{"key":"ref25","doi-asserted-by":"crossref","first-page":"67","DOI":"10.1016\/j.ejpn.2023.06.008","volume":"46","author":"Landfeldt","year":"2023","journal-title":"Eur J Paediatr Neurol"},{"key":"ref26","doi-asserted-by":"crossref","first-page":"508","DOI":"10.1111\/dmcn.12938","volume":"58","author":"Landfeldt","year":"2016","journal-title":"Dev Med Child Neurol"},{"key":"ref27","doi-asserted-by":"crossref","first-page":"275","DOI":"10.1007\/s40273-022-01197-9","volume":"41","author":"Landfeldt","year":"2023","journal-title":"Pharmacoeconomics"},{"key":"ref28","doi-asserted-by":"crossref","first-page":"322","DOI":"10.1177\/0883073819900463","volume":"35","author":"Weaver","year":"2020","journal-title":"J Child Neurol"},{"key":"ref29","doi-asserted-by":"crossref","first-page":"291","DOI":"10.1016\/j.pedneo.2022.01.002","volume":"63","author":"Aksaralikitsunti","year":"2022","journal-title":"Pediatr Neonatol"},{"key":"ref30","doi-asserted-by":"crossref","first-page":"e0150545","DOI":"10.1371\/journal.pone.0150545","volume":"11","author":"Berman","year":"2016","journal-title":"PLoS One"},{"key":"ref31","doi-asserted-by":"crossref","first-page":"101","DOI":"10.1186\/1477-7525-11-101","volume":"11","author":"Rajmil","year":"2013","journal-title":"Health Qual Life Outcomes"},{"key":"ref32","doi-asserted-by":"crossref","first-page":"1043","DOI":"10.1007\/s40273-022-01177-z","volume":"40","author":"Khanna","year":"2022","journal-title":"Pharmacoeconomics"},{"key":"ref33","doi-asserted-by":"crossref","first-page":"393","DOI":"10.1136\/archdischild-2015-310068","volume":"102","author":"Haverman","year":"2017","journal-title":"Arch Dis Child"}],"container-title":["Patient Related Outcome Measures"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/www.dovepress.com\/article\/download\/104263","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/www.dovepress.com\/article\/download\/104263","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,6,1]],"date-time":"2026-06-01T22:25:22Z","timestamp":1780352722000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.dovepress.com\/agreement-between-child-self--and-parent-proxy-reports-of-health-relat-peer-reviewed-fulltext-article-PROM"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,6]]},"references-count":33,"URL":"https:\/\/doi.org\/10.2147\/prom.s517362","relation":{},"ISSN":["1179-271X"],"issn-type":[{"value":"1179-271X","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,6]]}}}