dc.contributor.author | Griese, Matthias | |
dc.contributor.author | Seidl, Elias | |
dc.contributor.author | Hengst, Meike | |
dc.contributor.author | Reu, Simone | |
dc.contributor.author | Rock, Hans | |
dc.contributor.author | Anthony, Gisela | |
dc.contributor.author | Kiper, Nural | |
dc.contributor.author | Emiralioglu, Nagehan | |
dc.contributor.author | Snijders, Deborah | |
dc.contributor.author | Goldbeck, Lutz | |
dc.contributor.author | Leidl, Reiner | |
dc.contributor.author | Ley-Zaporozhan, Julia | |
dc.contributor.author | Krueger-Stollfuss, Ingrid | |
dc.contributor.author | Kammer, Birgit | |
dc.contributor.author | Wesselak, Traudl | |
dc.contributor.author | Eismann, Claudia | |
dc.contributor.author | Schams, Andrea | |
dc.contributor.author | Neuner, Doerthe | |
dc.contributor.author | MacLean, Morag | |
dc.contributor.author | Nicholson, Andrew G. | |
dc.contributor.author | Lauren, McCann | |
dc.contributor.author | Clement, Annick | |
dc.contributor.author | Epaud, Ralph | |
dc.contributor.author | de Blic, Jacques | |
dc.contributor.author | Ashworth, Michael | |
dc.contributor.author | Aurora, Paul | |
dc.contributor.author | Calder, Alistair | |
dc.contributor.author | Wetzke, Martin | |
dc.contributor.author | Kappler, Matthias | |
dc.contributor.author | Cunningham, Steve | |
dc.contributor.author | Schwerk, Nicolaus | |
dc.contributor.author | Bush, Andy | |
dc.date.accessioned | 2019-12-10T10:39:10Z | |
dc.date.available | 2019-12-10T10:39:10Z | |
dc.date.issued | 2018 | |
dc.identifier.issn | 0040-6376 | |
dc.identifier.uri | https://doi.org/10.1136/thoraxjnl-2017-210519 | |
dc.identifier.uri | http://hdl.handle.net/11655/14102 | |
dc.description.abstract | Background Children's interstitial lung diseases (chILD) cover many rare entities, frequently not diagnosed or studied in detail. There is a great need for specialised advice and for internationally agreed subclassification of entities collected in a register. Our objective was to implement an international management platform with independent multidisciplinary review of cases at presentation for long-term follow-up and to test if this would allow for more accurate diagnosis. Also, quality and reproducibility of a diagnostic subclassification system were assessed using a collection of 25 complex chILD cases. Methods A web-based chILD management platform with a registry and biobank was successfully designed and implemented. Results Over a 3-year period, 575 patients were included for observation spanning a wide spectrum of chILD. In 346 patients, multidisciplinary reviews were completed by teams at five international sites (Munich 51%, London 12%, Hannover 31%, Ankara 1% and Paris 5%). In 13%, the diagnosis reached by the referring team was not confirmed by peer review. Among these, the diagnosis initially given was wrong (27%), imprecise (50%) or significant information was added (23%). The ability of nine expert clinicians to subcategorise the final diagnosis into the chILD-EU register classification had an overall exact inter-rater agreement of 59% on first assessment and after training, 64%. Only 10% of the 'wrong' answers resulted in allocation to an incorrect category. Subcategorisation proved useful but training is needed for optimal implementation. Conclusions We have shown that chILD-EU has generated a platform to help the clinical assessment of chILD. | |
dc.language.iso | en | |
dc.publisher | Bmj Publishing Group | |
dc.relation.isversionof | 10.1136/thoraxjnl-2017-210519 | |
dc.rights | info:eu-repo/semantics/openAccess | |
dc.subject | Respiratory System | |
dc.title | International Management Platform for Children'S Interstitial Lung Disease (Child-Eu) | |
dc.type | info:eu-repo/semantics/article | |
dc.type | info:eu-repo/semantics/publishedVersion | |
dc.relation.journal | Thorax | |
dc.contributor.department | Çocuk Sağlığı ve Hastalıkları | |
dc.identifier.volume | 73 | |
dc.identifier.issue | 3 | |
dc.identifier.startpage | 231 | |
dc.identifier.endpage | 239 | |
dc.description.index | WoS | |
dc.description.index | Scopus | |