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SHR Neuro Cancer Cardio Lipid Metab Microb
Griese, M; Seidl, E; Hengst, M; Reu, S; Rock, H; Anthony, G; Kiper, N; Emiralioğlu, N; Snijders, D; Goldbeck, L; Leidl, R; Ley-Zaporozhan, J; Krüger-Stollfuss, I; Kammer, B; Wesselak, T; Eismann, C; Schams, A; Neuner, D; MacLean, M; Nicholson, AG; Lauren, M; Clement, A; Epaud, R; de Blic, J; Ashworth, M; Aurora, P; Calder, A; Wetzke, M; Kappler, M; Cunningham, S; Schwerk, N; Bush, A; the other chILD-EU collaborators.
International management platform for children's interstitial lung disease (chILD-EU).
Thorax. 2018; 73(3): 231-239.
Doi: 10.1136/thoraxjnl-2017-210519
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- Study Group Members Med Uni Graz:
- Eber Ernst
- Pfleger Andreas
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- Abstract:
- 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. A web-based chILD management platform with a registry and biobank was successfully designed and implemented. 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. We have shown that chILD-EU has generated a platform to help the clinical assessment of chILD. Results, NCT02852928. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.
- Find related publications in this database (using NLM MeSH Indexing)
- Adolescent -
- Adult -
- Child -
- Child, Preschool -
- Female -
- Humans -
- Infant -
- Lung Diseases, Interstitial - diagnosis
- Male -
- Registries -
- Reproducibility of Results -
- Young Adult -
- Find related publications in this database (Keywords)
- paediatric interstitial lung disease
- rare lung diseases
- paediatric lung disaese