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

and the other chILD-EU collaborators; Matthias Griese; Elias Seidl; Meike Hengst; Simone Reu; Hans Rock; Gisela Anthony; Nural Kiper; Nagehan Emiralioğlu; Deborah Snijders; Lutz Goldbeck; Reiner Leidl; Julia Ley-Zaporozhan; Ingrid Krüger-Stollfuss; Birgit Kammer; Traudl Wesselak; Claudia Eismann; Andrea Schams; Doerthe Neuner; Morag MacLean; Andrew G Nicholson; McCann Lauren; Annick Clement; Ralph Epaud; Jacques de Blic; Michael Ashworth; Paul Aurora; Alistair Calder; Martin Wetzke; Matthias Kappler; Steve Cunningham; Nicolaus Schwerk; Andy Bush

doi:10.1136/thoraxjnl-2017-210519

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

and the other chILD-EU collaborators, Matthias Griese, Elias Seidl, Meike Hengst, Simone Reu, Hans Rock, Gisela Anthony, Nural Kiper, Nagehan Emiralioğlu, Deborah Snijders, Lutz Goldbeck, Reiner Leidl, Julia Ley-Zaporozhan, Ingrid Krüger-Stollfuss, Birgit Kammer, Traudl Wesselak, Claudia Eismann, Andrea Schams, Doerthe Neuner, Morag MacLeanAndrew G Nicholson, McCann Lauren, Annick Clement, Ralph Epaud, Jacques de Blic, Michael Ashworth, Paul Aurora, Alistair Calder, Martin Wetzke, Matthias Kappler, Steve Cunningham, Nicolaus Schwerk, Andy Bush

Research output: Contribution to journal › Article › peer-review

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.

Original language	English
Journal	Thorax
Early online date	22 Oct 2017
DOIs	https://doi.org/10.1136/thoraxjnl-2017-210519
Publication status	Published - 3 Nov 2017

Keywords

Journal Article

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10.1136/thoraxjnl-2017-210519

International management platform for children’s lung diseaseAccepted author manuscript, 3.32 MB

Steve Cunningham
- Deanery of Clinical Sciences - Professor of Paediatric Respiratory Medicine
- MRC Centre for Reproductive Health
- Centre for Inflammation Research
Person: Academic: Research Active

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and the other chILD-EU collaborators, 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., ... Bush, A. (2017). International management platform for children's interstitial lung disease (chILD-EU). Thorax. https://doi.org/10.1136/thoraxjnl-2017-210519

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title = "International management platform for children's interstitial lung disease (chILD-EU)",

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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note = "{\textcopyright} Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2017. All rights reserved. No commercial use is permitted unless otherwise expressly granted.",

year = "2017",

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doi = "10.1136/thoraxjnl-2017-210519",

language = "English",

journal = "Thorax",

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and the other chILD-EU collaborators, 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 2017, 'International management platform for children's interstitial lung disease (chILD-EU)', Thorax. https://doi.org/10.1136/thoraxjnl-2017-210519

TY - JOUR

T1 - International management platform for children's interstitial lung disease (chILD-EU)

AU - and the other chILD-EU collaborators

AU - Griese, Matthias

AU - Seidl, Elias

AU - Hengst, Meike

AU - Reu, Simone

AU - Rock, Hans

AU - Anthony, Gisela

AU - Kiper, Nural

AU - Emiralioğlu, Nagehan

AU - Snijders, Deborah

AU - Goldbeck, Lutz

AU - Leidl, Reiner

AU - Ley-Zaporozhan, Julia

AU - Krüger-Stollfuss, Ingrid

AU - Kammer, Birgit

AU - Wesselak, Traudl

AU - Eismann, Claudia

AU - Schams, Andrea

AU - Neuner, Doerthe

AU - MacLean, Morag

AU - Nicholson, Andrew G

AU - Lauren, McCann

AU - Clement, Annick

AU - Epaud, Ralph

AU - de Blic, Jacques

AU - Ashworth, Michael

AU - Aurora, Paul

AU - Calder, Alistair

AU - Wetzke, Martin

AU - Kappler, Matthias

AU - Cunningham, Steve

AU - Schwerk, Nicolaus

AU - Bush, Andy

PY - 2017/11/3

Y1 - 2017/11/3

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.

AB - 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.

KW - Journal Article

U2 - 10.1136/thoraxjnl-2017-210519

DO - 10.1136/thoraxjnl-2017-210519

M3 - Article

C2 - 29056600

JO - Thorax

JF - Thorax

SN - 0040-6376

ER -

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

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Steve Cunningham

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