{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,12,20]],"date-time":"2025-12-20T22:21:01Z","timestamp":1766269261004,"version":"3.41.2"},"reference-count":9,"publisher":"Frontiers Media SA","license":[{"start":{"date-parts":[[2019,11,13]],"date-time":"2019-11-13T00:00:00Z","timestamp":1573603200000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["frontiersin.org"],"crossmark-restriction":true},"short-container-title":["Front. Neurol."],"DOI":"10.3389\/fneur.2019.01182","type":"journal-article","created":{"date-parts":[[2019,11,13]],"date-time":"2019-11-13T04:47:36Z","timestamp":1573620456000},"update-policy":"https:\/\/doi.org\/10.3389\/crossmark-policy","source":"Crossref","is-referenced-by-count":4,"title":["The TOSCA Registry for Tuberous Sclerosis\u2014Lessons Learnt for Future Registry Development in Rare and Complex Diseases"],"prefix":"10.3389","volume":"10","author":[{"given":"Ruben","family":"Marques","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Elena","family":"Belousova","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Mirjana P.","family":"Benedik","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Tom","family":"Carter","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Vincent","family":"Cottin","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Paolo","family":"Curatolo","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Maria","family":"Dahlin","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Lisa","family":"D'Amato","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Guillaume","family":"Beaure d'Aug\u00e8res","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Petrus J.","family":"de Vries","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jos\u00e9 C.","family":"Ferreira","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Martha","family":"Feucht","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Carla","family":"Fladrowski","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Christoph","family":"Hertzberg","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Anna C.","family":"Jansen","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Sergiusz","family":"Jozwiak","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"John C.","family":"Kingswood","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"John A.","family":"Lawson","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Alfons","family":"Macaya","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Finbar","family":"O'Callaghan","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jiong","family":"Qin","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Valentin","family":"Sander","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Matthias","family":"Sauter","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Seema","family":"Shah","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Yukitoshi","family":"Takahashi","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Renaud","family":"Touraine","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Sotiris","family":"Youroukos","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Bernard","family":"Zonnenberg","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Rima","family":"Nabbout","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"1965","published-online":{"date-parts":[[2019,11,13]]},"reference":[{"unstructured":"Discussion Paper: Use of Patient Disease Registries for Regulatory Purposes \u2013 Methodological and Operational Considerations2018","key":"B1"},{"volume-title":"Registries for Evaluating Patient Outcomes: A User's Guide","year":"2014","author":"Gliklich","key":"B2"},{"unstructured":"Rare Disease Registries in Europe.2018","key":"B3"},{"key":"B4","doi-asserted-by":"publisher","first-page":"182","DOI":"10.1186\/s13023-014-0182-9","article-title":"TOSCA - first international registry to address knowledge gaps in the natural history and management of tuberous sclerosis complex","volume":"9","author":"Kingswood","year":"2014","journal-title":"Orphanet J Rare Dis."},{"unstructured":"2019","key":"B5"},{"key":"B6","doi-asserted-by":"publisher","first-page":"i3319","DOI":"10.1136\/bmj.i3319","article-title":"Patient focused registries can improve health, care and science","volume":"354","author":"Nelson","year":"2016","journal-title":"BMJ"},{"key":"B7","doi-asserted-by":"publisher","first-page":"450","DOI":"10.1002\/ibd.21394","article-title":"ImproveCareNow: the development of a pediatric inflammatory bowel disease improvement network","volume":"17","author":"Crandall","year":"2011","journal-title":"Inflamm Bowel Dis."},{"key":"B8","doi-asserted-by":"publisher","first-page":"1838","DOI":"10.1136\/bmj.g1838","article-title":"Revolutionising management of chronic disease: the ParkinsonNet approach","volume":"348","author":"Bloem","year":"2014","journal-title":"BMJ."},{"key":"B9","doi-asserted-by":"publisher","first-page":"211","DOI":"10.1055\/s-0037-1604110","article-title":"Translational research in europe for the assessment and treatment for Neuromuscular Disorders (TREAT-NMD)","volume":"48","author":"Leary","year":"2017","journal-title":"Neuropediatrics"}],"container-title":["Frontiers in Neurology"],"original-title":[],"link":[{"URL":"https:\/\/www.frontiersin.org\/article\/10.3389\/fneur.2019.01182\/full","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2019,11,13]],"date-time":"2019-11-13T04:47:39Z","timestamp":1573620459000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.frontiersin.org\/article\/10.3389\/fneur.2019.01182\/full"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2019,11,13]]},"references-count":9,"alternative-id":["10.3389\/fneur.2019.01182"],"URL":"https:\/\/doi.org\/10.3389\/fneur.2019.01182","relation":{},"ISSN":["1664-2295"],"issn-type":[{"type":"electronic","value":"1664-2295"}],"subject":[],"published":{"date-parts":[[2019,11,13]]},"article-number":"1182"}}