Exploring clinical and epidemiological characteristics of interstitial lung diseases: rationale, aims, and design of a nationwide prospective registry$dthe EXCITING-ILD registry

Despite a number of prospective registries conducted in past years, the current epidemiology of interstitial lung diseases (ILD) is still not well defined, particularly regarding the prevalence and incidence, their management, healthcare utilisation needs, and healthcare-associated costs. To address...

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Main Authors: Kreuter, Michael (Author) , Herth, Felix (Author) , Wacker, Margarethe (Author) , Leidl, Reiner (Author) , Hellmann, Andreas (Author) , Pfeifer, Michael (Author) , Behr, Jürgen (Author) , Witt, Sabine (Author) , Kauschka, Dagmar (Author) , Mall, Marcus A. (Author) , Günther, Andreas (Author) , Markart, Philipp (Author)
Format: Article (Journal)
Language:English
Published: 10 Nov 2015
In: BioMed research international
Year: 2015, Volume: 2015
ISSN:2314-6141
DOI:10.1155/2015/123876
Online Access:Resolving-System, lizenzpflichtig, Volltext: https://doi.org/10.1155/2015/123876
Verlag, lizenzpflichtig, Volltext: https://www.hindawi.com/journals/bmri/2015/123876/
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Author Notes:Michael Kreuter, Felix J. F. Herth, Margarethe Wacker, Reiner Leidl, Andreas Hellmann, Michael Pfeifer, Jürgen Behr, Sabine Witt, Dagmar Kauschka, Marcus Mall, Andreas Günther, and Philipp Markart

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520 |a Despite a number of prospective registries conducted in past years, the current epidemiology of interstitial lung diseases (ILD) is still not well defined, particularly regarding the prevalence and incidence, their management, healthcare utilisation needs, and healthcare-associated costs. To address these issues in Germany, a new prospective ILD registry, “Exploring Clinical and Epidemiological Characteristics of Interstitial Lung Diseases” (EXCITING-ILD), is being conducted by the German Centre for Lung Research in association with ambulatory, inpatient, scientific pulmonology organisations and patient support groups. This multicentre, noninterventional, prospective, and observational ILD registry aims to collect comprehensive and validated data from all healthcare institutions on the incidence, prevalence, characteristics, management, and outcomes regarding all ILD presentations in the real-world setting. Specifically, this registry will collect demographic data, disease-related data such as ILD subtype, treatments, diagnostic procedures (e.g., HRCT, surgical lung biopsy), risk factors (e.g., familial ILD), significant comorbidities, ILD managements, and disease outcomes as well as healthcare resource consumption. The EXCITING-ILD registry will include in-patient and out-patient ILD healthcare facilities in more than 100 sites. In summary, this registry will document comprehensive and current epidemiological data as well as important health economic data for ILDs in Germany. 
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