International management platform for children's interstitial lung disease (chILD-EU)
| Autor: | Griese M, Seidl E, Hengst M, Reu S, Rock H, Anthony G, Kiper N, Emiralioglu N, Snijders D, Goldbeck L, Leidl R, Ley-Zaporozhan J, Kruger-Stollfuss I, Kammer B, Wesselak T, Eismann C, Schams A, Neuner D, MacLean M, Nicholson A, 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, chILD-EU Collaborators |
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| Přispěvatelé: | Çocuk Sağlığı ve Hastalıkları |
| Jazyk: | angličtina |
| Rok vydání: | 2017 |
| Předmět: |
Adult
Male Pulmonary and Respiratory Medicine Pediatrics medicine.medical_specialty Adolescent paediatric interstitial lung disease education Respiratory System and the other chILD-EU collaborators Multidisciplinary review Young Adult 03 medical and health sciences 0302 clinical medicine Multidisciplinary approach Journal Article Humans Medicine Registries 030212 general & internal medicine Child Trial registration rare lung diseases business.industry Interstitial lung disease Infant Reproducibility of Results 1103 Clinical Sciences medicine.disease Biobank 3. Good health Test (assessment) paediatric lung disaese 030228 respiratory system Child Preschool Female Medical emergency Lung Diseases Interstitial business International management |
| Zdroj: | THORAX r-INCLIVA. Repositorio Institucional de Producción Científica de INCLIVA instname 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, A G, 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 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, A G, 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, Rubak, S L M & and the other chILD-EU collaborators 2018, ' International management platform for children's interstitial lung disease (chILD-EU) ', Thorax, vol. 73, no. 3, pp. 231-239 . https://doi.org/10.1136/thoraxjnl-2017-210519 |
| ISSN: | 0040-6376 |
| Popis: | BackgroundChildren’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.MethodsA web-based chILD management platform with a registry and biobank was successfully designed and implemented.ResultsOver 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.ConclusionsWe have shown that chILD-EU has generated a platform to help the clinical assessment of chILD.Trial registration numberResults, NCT02852928. |
| Databáze: | OpenAIRE |
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