Challenges in pulmonary fibrosis: 8 · The need for an international registry for idiopathic pulmonary fibrosis

Thorax

Volumn 63, Issue 3, 2008, Pages 285-287

  Wilson, J W ^a   Du Bois, R M ^b   King Jr , T E ^c  

^a MONASH UNIVERSITY   (Australia)

^b ROYAL BROMPTON HOSPITAL   (United Kingdom)

^c SAN FRANCISCO GENERAL HOSPITAL   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

COMPREHENSION; CYSTIC FIBROSIS; DISEASE REGISTRY; FIBROSING ALVEOLITIS; HEALTH CENTER; HUMAN; INSTITUTIONAL CARE; INTERSTITIAL LUNG DISEASE; LUNG TRANSPLANTATION; LYMPHANGIOLEIOMYOMATOSIS; MEDICAL INFORMATION; OUTCOME ASSESSMENT; PRIORITY JOURNAL; REVIEW; SURVIVAL; TREATMENT PLANNING;

HUMANS; INTERNATIONAL COOPERATION; PULMONARY FIBROSIS; REGISTRIES;

EID: 40649093097     PISSN: 00406376     EISSN: None     Source Type: Journal    
DOI: 10.1136/thx.2004.031062     Document Type: Review

References (30)

1. Anon. Interstitial lung diseases. In: Loddenkemper R, Gibson GJ, Sibille Y, eds. European Lung White Book. Lausanne: European Respiratory Society, 2003:74-83.
2. American Thoracic Society. Idiopathic pulmonary fibrosis: diagnosis and treatment. International consensus statement. American Thoracic Society (ATS) and the European Respiratory Society (ERS). Am J Respir Crit Care Med 2000;161(2 Pt 1):646-64.
3. American Thoracic Society/European Respiratory Society. International Multidisciplinary Consensus Classification of the Idiopathic Interstitial Pneumonias. Joint statement of the American Thoracic Society (ATS) and the European Respiratory Society (ERS) adopted by the ATS board of directors, June 2001 and by the ERS Executive Committee, June 2001. Am J Respir Crit Care Med 2002;165:277-304.
4. Mukerjee D, St George D, Coleiro B, et al. Prevalence and outcome in systemic sclerosis associated pulmonary arterial hypertension: application of a registry approach. Ann Rheum Dis 2003;62:1088-93.
5. Whelan TP, Dunitz JM, Kelly RF, et al. Effect of preoperative pulmonary artery pressure on early survival after lung transplantation for idiopathic pulmonary fibrosis. J Heart Lung Transplant 2005;24:1269-74.
6. Keck BM, Bennett LE, Fiol BS, et al. Worldwide thoracic organ transplantation: a report from the UNOS/ISHLT International Registry for Thoracic Organ Transplantation. Clin Transpl 1995:35-48.
7. Bennett LE, Keck BM, Hertz MI, et al. Worldwide thoracic organ transplantation: a report from the UNOS/ISHLT international registry for thoracic organ transplantation. Clin Transpl 2001:25-40.
8. Christie JD, Carby M, Bag R, et al. Report of the ISHLT Working Group on Primary Lung Graft Dysfunction part II: definition. A consensus statement of the International Society for Heart and Lung Transplantation. J Heart Lung Transplant 2005;24:1454-9.
9. Hosenpud JD, Bennett LE, Keck BM, et al. Effect of diagnosis on survival benefit of lung transplantation for end-stage lung disease. Lancet 1998;351:24-7.
10. Shorr AF, Davies DB, Nathan SD. Outcomes for patients with sarcoidosis awaiting lung transplantation. Chest 2002;122:233-8.
11. Ryu JH, Moss J, Beck GJ, et al. The NHLBI Lymphangioleiomyomatosis Registry: characteristics of 230 patients at enrollment. Am J Respir Crit Care Med 2006;173:105-11.
12. Rosenfeld M. Overview of published evidence on outcomes with early diagnosis from large US observational studies. J Pediatr 2005;147(3 Suppl):S11-4.
13. Strobl J, Enzer I, Bagust A, et al. Using disease registries for pharmacoepidemiological research: a case study of data from a cystic fibrosis registry. Pharmacoepidemiol Drug Saf 2003;12:467- 73.
14. Hodson ME, McKenzie S, Harms HK, et al. Dornase alfa in the treatment of cystic fibrosis in Europe: a report from the Epidemiologic Registry of Cystic Fibrosis. Pediatr Pulmonol 2003;36:427-32.
15. O'Connor GT, Quinton HB, Kneeland T, et al. Median household income and mortality rate in cystic fibrosis. Pediatrics 2003;111(4 Pt 1):e333-9.
16. McKone EF, Emerson SS, Edwards KL, et al. Effect of genotype on phenotype and mortality in cystic fibrosis: a retrospective cohort study. Lancet 2003;361:1671-6.
17. Mayer-Hamblett N, Rosenfeld M, Emerson J, et al. Developing cystic fibrosis lung transplant referral criteria using predictors of 2-year mortality. Am J Respir Crit Care Med 2002;166:1550-5.
18. Emerson J, Rosenfeld M, McNamara S, et al. Pseudomonas aeruginosa and other predictors of mortality and morbidity in young children with cystic fibrosis. Pediatr Pulmonol 2002;34:91-100.
19. Wiedemann B, Steinkamp G, Sens B, et al. The German cystic fibrosis quality assurance project: clinical features in children and adults. Eur Respir J 2001;17:1187-94.
20. Liou TG, Adler FR, Fitzsimmons SC, et al. Predictive 5-year survivorship model of cystic fibrosis. Am J Epidemiol 2001;153:345-52.
21. Roelandt M, Demedts M, Callebaut W, 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 Clin Belg 1995;50:260-8.
22. Schweisfurth H, Kieslich C, Satake N, 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 2003;57:373-82.
23. Agostini C, Albera C, Bariffi F, et al. First report of the Italian register for diffuse infiltrative lung disorders (RIPID). Monaldi Arch Chest Dis 2001;56:364-8.
24. Thomeer MJ, Costabel U, Rizzato G, et al. Comparison of registries of interstitial lung diseases in three European countries. Eur Respir J 2001;18(32 Suppl):114-8S.
25. Coultas DB, Zumwalt RE, Black WC, et al. The epidemiology of interstitial lung diseases. Am J Respir Crit Care Med 1994;150:967-72.
26. Coultas DB, Hughes MP. Accuracy of mortality data for interstitial lung diseases in New Mexico, USA. Thorax 1996;51:717-20.
27. Xaubet A, Ancochea J, Morell F, et al. Report on the incidence of interstitial lung diseases in Spain. Sarcoidosis Vasc Diffuse Lung Dis 2004;21:64-70.
28. Hodgson U, Laitinen T, Tukiainen P. Nationwide prevalence of sporadic and familial idiopathic pulmonary fibrosis: evidence of founder effect among multiplex families in Finland. Thorax 2002;57:338-42.
29. McCormick J, Sims EJ, Green MW, et al. Comparative analysis of Cystic Fibrosis Registry data from the UK with USA, France and Australasia. J Cyst Fibros 2005;4:115-22.
30. Crystal RG, Bitterman PB, Mossman B, et al. Future research directions in idiopathic pulmonary fibrosis. Summary of a National Heart, Lung, and Blood Institute Working Group. Am J Respir Crit Care Med 2002;166:236-46.