Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2015:2015:123876.
doi: 10.1155/2015/123876. Epub 2015 Nov 10.

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

Michael Kreuter  1 , Felix J F Herth  1 , Margarethe Wacker  2 , Reiner Leidl  3 , Andreas Hellmann  4 , Michael Pfeifer  5 , Jürgen Behr  6 , Sabine Witt  2 , Dagmar Kauschka  7 , Marcus Mall  8 , Andreas Günther  9 , Philipp Markart  10
Affiliations

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

Michael Kreuter et al. Biomed Res Int. 2015.

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.

PubMed Disclaimer

Figures

Figure 1
Figure 1
Classification of ILDs. PAP: pulmonary alveolar proteinosis, LAM: lymphangioleiomyomatosis, and PLHC: pulmonary Langerhans cell histiocytosis. Adapted from the American Thoracic Society, European Respiratory Society International Multidisciplinary Consensus Classification of the Idiopathic Interstitial Pneumonias, Am J Respir Crit Care Med. 2002, and Travis et al. Am J Respir Crit Care Med. 2013 [2, 3].
See this image and copyright information in PMC

References

    1. Valeyre D., Duchemann B., Nunes H., Uzunhan Y., Annesi-Maesano I. Interstitial lung diseases. In: Welte T., Annesi-Maesano I., Viegi G., Lundbäck B., editors. Respiratory Epidemiology. chapter 6. Vol. 65. ERS; 2014. (ERS Monograph). - DOI
    1. American Thoracic Society. American Thoracic Society/European Respiratory Society international multidisciplinary consensus classification of the idiopathic interstitial pneumonias. American Journal of Respiratory and Critical Care Medicine. 2002;165(2):277–304. doi: 10.1164/ajrccm.165.2.ats01. - DOI - PubMed
    1. Travis W. D., Costabel U., Hansell D. M. An official American Thoracic Society/European Respiratory Society statement: update of the international multidisciplinary classification of the idiopathic interstitial pneumonias. American Journal of Respiratory and Critical Care Medicine. 2013;188(6):733–748. doi: 10.1164/rccm.201308-1483ST. - DOI - PMC - PubMed
    1. GBD 2013 Mortality and Causes of Death Collaborators. Global, regional, and national age–sex specific all-cause and cause-specific mortality for 240 causes of death, 1990–2013: a systematic analysis for the Global Burden of Disease Study 2013. The Lancet. 2015;385(9963):117–171. doi: 10.1016/S0140-6736(14)61682-2. - DOI - PMC - PubMed
    1. Raghu G., Collard H. R., Egan J. J., et al. An official ATS/ERS/JRS/ALAT statement: idiopathic pulmonary fibrosis: evidence-based guidelines for diagnosis and management. American Journal of Respiratory and Critical Care Medicine. 2011;183(6):788–824. doi: 10.1164/rccm.2009-040gl. - DOI - PMC - PubMed

Publication types