TY - JOUR T1 - International management platform for children’s interstitial lung disease (chILD-EU) JF - Thorax JO - Thorax SP - 231 LP - 239 DO - 10.1136/thoraxjnl-2017-210519 VL - 73 IS - 3 AU - Matthias Griese AU - Elias Seidl AU - Meike Hengst AU - Simone Reu AU - Hans Rock AU - Gisela Anthony AU - Nural Kiper AU - Nagehan Emiralioğlu AU - Deborah Snijders AU - Lutz Goldbeck AU - Reiner Leidl AU - Julia Ley-Zaporozhan AU - Ingrid Krüger-Stollfuss AU - Birgit Kammer AU - Traudl Wesselak AU - Claudia Eismann AU - Andrea Schams AU - Doerthe Neuner AU - Morag MacLean AU - Andrew G Nicholson AU - McCann Lauren AU - Annick Clement AU - Ralph Epaud AU - Jacques de Blic AU - Michael Ashworth AU - Paul Aurora AU - Alistair Calder AU - Martin Wetzke AU - Matthias Kappler AU - Steve Cunningham AU - Nicolaus Schwerk AU - Andy Bush A2 - , Y1 - 2018/03/01 UR - http://thorax.bmj.com/content/73/3/231.abstract N2 - 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.Trial registration number Results, NCT02852928. ER -