title: Exploring Clinical and Epidemiological Characteristics of Interstitial Lung Diseases: Rationale, Aims, and Design of a Nationwide Prospective Registry--The EXCITING-ILD Registry.
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.
authors.affiliation: Pneumology and Respiratory Critical Care Medicine, Centre for Interstitial and Rare Lung Diseases, Thoraxklinik, University of Heidelberg, 69126 Heidelberg, Germany ; Translational Lung Research Centre Heidelberg (TLRCH), Member of the German Centre for Lung Research (DZL), 69120 Heidelberg, Germany.
authors.forename: Michael
authors.initials: M
authors.lastname: Kreuter
authors.affiliation: Pneumology and Respiratory Critical Care Medicine, Centre for Interstitial and Rare Lung Diseases, Thoraxklinik, University of Heidelberg, 69126 Heidelberg, Germany ; Translational Lung Research Centre Heidelberg (TLRCH), Member of the German Centre for Lung Research (DZL), 69120 Heidelberg, Germany.
authors.forename: Felix J F
authors.initials: FJ
authors.lastname: Herth
authors.affiliation: Institute 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.
authors.forename: Margarethe
authors.initials: M
authors.lastname: Wacker
authors.affiliation: Institute 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 ; Institute of Health Economics and Healthcare Management, Munich Centre of Health Sciences, Ludwig Maximilian University of Munich, 80336 Munich, Germany.
authors.forename: Reiner
authors.initials: R
authors.lastname: Leidl
authors.affiliation: Association of German Pneumologists (BdP), 86150 Augsburg, Germany.
authors.forename: Andreas
authors.initials: A
authors.lastname: Hellmann
authors.affiliation: Medical Clinic II, University of Regensburg and Klinikum Donaustauf, 93093 Donaustauf, Germany ; Institute of Lung Research, 10405 Berlin, Germany.
authors.forename: Michael
authors.initials: M
authors.lastname: Pfeifer
authors.affiliation: Medical 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.
authors.forename: Jürgen
authors.initials: J
authors.lastname: Behr
authors.affiliation: Institute 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.
authors.forename: Sabine
authors.initials: S
authors.lastname: Witt
authors.affiliation: Patient Support Group Lungenfibrose e.V., 45242 Essen, Germany.
authors.forename: Dagmar
authors.initials: D
authors.lastname: Kauschka
authors.affiliation: Translational Lung Research Centre Heidelberg (TLRCH), Member of the German Centre for Lung Research (DZL), 69120 Heidelberg, Germany ; Department of Translational Pulmonology, University of Heidelberg, 69120 Heidelberg, Germany ; Division of Paediatric Pulmonology & Allergy and Cystic Fibrosis Center, Department of Paediatrics III, University of Heidelberg, 69120 Heidelberg, Germany.
authors.forename: Marcus
authors.initials: M
authors.lastname: Mall
authors.affiliation: Medical 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.
authors.forename: Andreas
authors.initials: A
authors.lastname: Günther
authors.affiliation: Medical 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 ; Medical Clinic V (Pneumology), Cardiothoracic Centre, Campus Fulda, University Medicine Marburg, 36043 Fulda, Germany.
authors.forename: Philipp
authors.initials: P
authors.lastname: Markart
mesh_terms: D001706:Biopsy; D005858:Germany; D017048:Health Care Costs; D006801:Humans; D008168:Lung / Q000503:physiopathology*; D017563:Lung Diseases, Interstitial / Q000191:economics / Q000453:epidemiology* / Q000503:physiopathology; D010045:Outpatients; D011446:Prospective Studies; D012042:Registries; D012307:Risk Factors