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

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

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",

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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

SN - 0040-6376

JO - Thorax

JF - Thorax

ER -

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

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Steve Cunningham

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