Exploring Clinical and Epidemiological Characteristics of Interstitial Lung Diseases: Rationale, Aims, and Design of a Nationwide Prospective Registry—The 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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Published in:BioMed research international 2015-01, Vol.2015 (2015), p.1-9
Main Authors: Mall, Marcus, Günther, Andreas, Markart, Philipp, Witt, Sabine, Behr, Jürgen, Pfeifer, Michael, Hellmann, Andreas, Leidl, Reiner, Wacker, Margarethe, Herth, Felix J. F., Kreuter, Michael, Kauschka, Dagmar
Format: Article
Language:English
Subjects:
Biopsy
Colleges & universities
Epidemiology
Germany
Health Care Costs
Humans
Lung - physiopathology
Lung diseases
Lung diseases, Interstitial
Lung Diseases, Interstitial - economics
Lung Diseases, Interstitial - epidemiology
Lung Diseases, Interstitial - physiopathology
Males
Medical prognosis
Mortality
Outpatients
Physiological aspects
Prospective Studies
Registries
Risk Factors
Sarcoidosis
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creator Mall, Marcus
Günther, Andreas
Markart, Philipp
Witt, Sabine
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Kreuter, Michael
Kauschka, Dagmar
description 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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subjects Biopsy
Colleges & universities
Epidemiology
Germany
Health Care Costs
Humans
Lung - physiopathology
Lung diseases
Lung diseases, Interstitial
Lung Diseases, Interstitial - economics
Lung Diseases, Interstitial - epidemiology
Lung Diseases, Interstitial - physiopathology
Males
Medical prognosis
Mortality
Outpatients
Physiological aspects
Prospective Studies
Registries
Risk Factors
Sarcoidosis
title Exploring Clinical and Epidemiological Characteristics of Interstitial Lung Diseases: Rationale, Aims, and Design of a Nationwide Prospective Registry—The EXCITING-ILD Registry
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