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BioMed Research International
Volume 2015 (2015), Article ID 123876, 9 pages
http://dx.doi.org/10.1155/2015/123876
Research Article

Exploring Clinical and Epidemiological Characteristics of Interstitial Lung Diseases: Rationale, Aims, and Design of a Nationwide Prospective Registry—The EXCITING-ILD Registry

1Pneumology and Respiratory Critical Care Medicine, Centre for Interstitial and Rare Lung Diseases, Thoraxklinik, University of Heidelberg, 69126 Heidelberg, Germany
2Translational Lung Research Centre Heidelberg (TLRCH), Member of the German Centre for Lung Research (DZL), 69120 Heidelberg, Germany
3Institute of Health Economics and Healthcare Management, Helmholtz Centre Munich GmbH, German Research Centre for Environmental Health, Member of the German Centre for Lung Research (DZL), Comprehensive Pneumology Centre Munich (CPCM), 85764 Neuherberg, Germany
4Institute of Health Economics and Healthcare Management, Munich Centre of Health Sciences, Ludwig Maximilian University of Munich, 80336 Munich, Germany
5Association of German Pneumologists (BdP), 86150 Augsburg, Germany
6Medical Clinic II, University of Regensburg and Klinikum Donaustauf, 93093 Donaustauf, Germany
7Institute of Lung Research, 10405 Berlin, Germany
8Medical Clinic V, University Clinic, Ludwig-Maximilians-University Munich, Comprehensive Pneumology Centre Munich (CPC-M), Member of the German Centre for Lung Research (DZL), 81377 München, Germany
9Patient Support Group Lungenfibrose e.V., 45242 Essen, Germany
10Department of Translational Pulmonology, University of Heidelberg, 69120 Heidelberg, Germany
11Division of Paediatric Pulmonology & Allergy and Cystic Fibrosis Center, Department of Paediatrics III, University of Heidelberg, 69120 Heidelberg, Germany
12Medical Clinic II, University Hospital Giessen, Universities of Giessen and Marburg Lung Centre (UGMLC), Member of the German Centre for Lung Research (DZL), 35392 Giessen, Germany
13Medical Clinic V (Pneumology), Cardiothoracic Centre, Campus Fulda, University Medicine Marburg, 36043 Fulda, Germany

Received 28 August 2015; Accepted 12 October 2015

Academic Editor: Paolo Spagnolo

Copyright © 2015 Michael Kreuter et al. This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

Abstract

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.