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

BioMed Research International

Volumn 2015, Issue , 2015, Pages

  Kreuter, Michael ^a,b   Herth, Felix J F ^a,b   Wacker, Margarethe ^c   Leidl, Reiner ^c,d   Hellmann, Andreas ^e   Pfeifer, Michael ^f,g   Behr, Jürgen ^d   Witt, Sabine ^c   Kauschka, Dagmar ^h   Mall, Marcus ^b,i   Günther, Andreas ^j   Markart, Philipp ^j,k  

^a UNIVERSITY OF HEIDELBERG   (Germany)

^b MEMBER OF THE GERMAN CENTER FOR LUNG RESEARCH DZL   (Germany)

^c INSTITUTE OF EPIDEMIOLOGY   (Germany)

^d UNIVERSITY OF MUNICH   (Germany)

^e Association of German Pneumologists (BdP)   (Germany)

^f UNIVERSITY OF REGENSBURG   (Germany)

^g Institute of Lung Research   (Germany)

^h Lungenfibrose eV   (Germany)

ⁱ UNIVERSITY OF HEIDELBERG   (Germany)

^j JUSTUS LIEBIG UNIVERSITY GIESSEN   (Germany)

^k PHILIPPS UNIVERSITY MARBURG   (Germany)

more..

Author keywords

[No Author keywords available]

Indexed keywords

ARTICLE; COMORBIDITY; DIAGNOSTIC PROCEDURE; EUROPE; HEALTH CARE FACILITY; HUMAN; INCIDENCE; INFORMATION DISSEMINATION; INTERSTITIAL LUNG DISEASE; OUTCOME ASSESSMENT; OUTPATIENT; PREVALENCE; PUBLICATION; REGISTER; RISK FACTOR; SUPPORT GROUP; BIOPSY; ECONOMICS; GERMANY; HEALTH CARE COST; LUNG; LUNG DISEASES, INTERSTITIAL; PATHOPHYSIOLOGY; PROSPECTIVE STUDY;

BIOPSY; GERMANY; HEALTH CARE COSTS; HUMANS; LUNG; LUNG DISEASES, INTERSTITIAL; OUTPATIENTS; PROSPECTIVE STUDIES; REGISTRIES; RISK FACTORS;

EID: 84948471364     PISSN: 23146133     EISSN: 23146141     Source Type: Journal    
DOI: 10.1155/2015/123876     Document Type: Article

References (26)

1. D. Valeyre, B. Duchemann, H. Nunes, Y. Uzunhan, and I. Annesi-Maesano, "Interstitial lung diseases," in Respiratory Epidemiology, T. Welte, I. Annesi-Maesano, G. Viegi, and B. Lundbäck, Eds., vol. 65 of ERSMonograph, chapter 6, ERS, 2014.
2. American Thoracic Society and European Respiratory Society, "American Thoracic Society/European Respiratory Society international multidisciplinary consensus classification of the idiopathic interstitial pneumonias," American Journal of Respiratory and Critical Care Medicine, vol. 165, no. 2, pp. 277-304, 2002.
3. W. D. Travis, U. Costabel, and D.M. Hansell, "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, vol. 188, no. 6, pp. 733-748, 2013.
4. 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, vol. 385, no. 9963, pp. 117-171, 2015.
5. G. Raghu, H. R. Collard, J. J. Egan 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, vol. 183, no. 6, pp. 788-824, 2011.
6. J. J. Swigris, A. L. Olson, T. J. Huie et al., "Sarcoidosis-related mortality in the United States from 1988 to 2007," American Journal of Respiratory and Critical Care Medicine, vol. 183, no. 11, pp. 1524-1530, 2011.
7. D. B. Coultas, R. E. Zumwalt, W. C. Black, and R. E. Sobonya, "The epidemiology of interstitial lung diseases," American Journal of Respiratory and Critical Care Medicine, vol. 150, no. 4, pp. 967-972, 1994.
8. A. Karakatsani, D. Papakosta, A. Rapti et al., "Epidemiology of interstitial lung diseases in Greece," Respiratory Medicine, vol. 103, no. 8, pp. 1122-1129, 2009.
9. A. Xaubet, J. Ancochea, F. Morell et al., "Reportonthe incidence of interstitial lung diseases in Spain," Sarcoidosis Vasculitis and Diffuse Lung Diseases, vol. 21, no. 1, pp. 64-70, 2004.
10. J. L. López-Campos and E. Rodríguez-Becerra, "Incidence of interstitial lung diseases in the south of Spain 1998-2000: the RENIA Study," European Journal of Epidemiology, vol. 19, no. 2, pp. 155-161, 2004.
11. B. Musellim, G. Okumus, E. Uzaslan et al., "Epidemiology and distribution of interstitial lung diseases in Turkey," The Clinical Respiratory Journal, vol. 8, no. 1, pp. 55-62, 2014.
12. J. Gribbin, R. B. Hubbard, I. Le Jeune, C. J. P. Smith, J. West, and L. J. Tata, "Incidence andmortality of idiopathic pulmonary fibrosis and sarcoidosis in the UK," Thorax, vol. 61, no. 11, pp. 980-985, 2006.
13. J. B. Kornum, S. Christensen, M. Grijota et al., "The incidence of interstitial lung disease 1995-2005: a Danish nationwide population-based study," BMC Pulmonary Medicine, vol. 8, article 24, 2008.
14. M. Demedts, A. U. Wells, J. M. Antó et al., "Interstitial lung diseases: an epidemiological overview," The European Respiratory Journal, vol. 18, no. 32, supplement, 2001.
15. M. Roelandt, M. Demedts, W. Callebaut et al., "Epidemiology of interstitial lung disease (ILD) in flanders: registration by pneumologists in 1992-1994. Working group on ILD, VRGT. Vereniging voor Respiratoire Gezondheidszorg en Tuberculosebestrijding," Acta Clinica Belgica, vol. 50, no. 5, pp. 260-268, 1995.
16. M. Thomeer, M. Demedts, and K. Vandeurzen, "Registration of interstitial lung diseases by 20 centres of respiratorymedicine in flanders," Acta Clinica Belgica, vol. 56, no. 3, pp. 163-172, 2001.
17. H. Schweisfurth, C. Kieslich, N. Satake et al., "How are interstitial lung diseases diagnosed in Germany? Results of the scientific registry for the exploration of interstitial lung diseases ('fibrosis registry') of the WATL," Pneumologie, vol. 57, no. 7, pp. 373-382, 2003 (German).
18. H. Schweisfurth, "Report by the Scientific Working Group for therapy of lung diseases: German fibrosis register with initial results," Pneumologie, vol. 50, no. 12, pp. 899-901, 1996 (German).
19. ERS, "Interstitial lung diseases," in ERS European Lung Whitebook, chapter 22, ERS, 2015, http://www.erswhitebook.org/chapters/interstitial-lung-diseases/.
20. J. Behr, M. Kreuter, M. H. Hoeper et al., "Management of patients with idiopathic pulmonary fibrosis in clinical practice: INSIGHTS-IPF registry," The European Respiratory Journal, vol. 46, no. 1, pp. 186-196, 2015.
21. L. Richeldi, R.M. du Bois, G. Raghu et al., "Efficacy and safety of nintedanib in idiopathic pulmonary fibrosis," The New England Journal of Medicine, vol. 370, no. 22, pp. 2071-2082, 2014.
22. T. E. King Jr., W. Z. Bradford, S. Castro-Bernardini et al., "A phase 3 trial of pirfenidone in patients with idiopathic pulmonary fibrosis," The New England Journal of Medicine, vol. 370, no. 22, pp. 2083-2092, 2014.
23. F. X. McCormack, Y. Inoue, J. Moss et al., "Efficacy and safety of sirolimus in lymphangioleiomyomatosis," The New England Journal of Medicine, vol. 364, no. 17, pp. 1595-1606, 2011.
24. D. Fioret, D. Mannino, and J. Roman, "In-hospitalmortality and costs related to idiopathic pulmonary fibrosis between 1993 and 2008," Chest, vol. 140, no. 4, Article ID 1038A, 2011.
25. E. Loveman, V. R. Copley, J. Colquitt et al., "The clinical effectiveness and cost-effectiveness of treatments for idiopathic pulmonary fibrosis: a systematic review and economic evaluation," Health Technology Assessment, vol. 19, no. 20, pp. 1-336, 2015.
26. T. A. Workman, "Engaging patients in information sharing and data collection, the role of patient-powered registries and research networks," Community Forum White Papers, American Institutes for Research, US Agency for Healthcare Research and Quality, Rockville, Md, USA, 2013.