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Journal Articles Thorax Year : 2017

International management platform for children’s interstitial lung disease (chILD-EU)

Andy Bush
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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. Trial registration number results, nct02852928.
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Dates and versions

inserm-04040506 , version 1 (12-04-2023)

Licence

Attribution - NonCommercial

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Matthias Griese, Elias Seidl, Meike Hengst, Simone Reu, Hans Rock, et al.. International management platform for children’s interstitial lung disease (chILD-EU). Thorax, 2017, 73 (3), pp.231 - 239. ⟨10.1136/thoraxjnl-2017-210519⟩. ⟨inserm-04040506⟩
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