Characteristics and management of idiopathic pulmonary fibrosis: INSIGHTS-IPF registry

被引:8
作者
Behr, J. [1 ]
Hoeper, M. M. [2 ]
Kreuter, M. [3 ]
Klotsche, J. [4 ]
Wirtz, H. [5 ]
Pittrow, D. [6 ]
机构
[1] Ruhr Univ Bochum, Berufsgenossenschaftliches Univ Klinikum Bergmann, Med Klin Pneumol Allergol Schlaf & Beatmungsmed 3, D-44789 Bochum, Germany
[2] Hannover Med Sch, Klin Pneumol, Hannover, Germany
[3] Univ Klinikum Heidelberg, Thoraxklin, Heidelberg, Germany
[4] Deutsch Rheuma Forschungsinst, Berlin, Germany
[5] Univ Klinikum Leipzig AoR, Dept Innere Med Neurol & Dermatol, Abt Pneumol, Leipzig, Germany
[6] Tech Univ Dresden, Fak Med, Inst Klin Pharmakol, Dresden, Germany
关键词
observational study; clinical practice; management; patient-related outcomes; resource utilization; INTERNATIONAL REGISTRY; LUNG; EPIDEMIOLOGY; DIAGNOSIS;
D O I
10.1055/s-0032-1327244
中图分类号
R5 [内科学];
学科分类号
1002 ; 100201 ;
摘要
Idiopathic pulmonary fibrosis (IPF), a manifestation of chronic progressive fibrosing interstitial pneumonia, is with a prevalence of 2-29 cases per 100,000 individuals a rare disease. Current treatment options are limited, and the mean survival time of the newly diagnosed (mostly elderly) patients is only about 2-3 years. As in Europe data are limited on the characteristics and management of such patients, INSIGHTS-IPF was initiated as a new registry that documents incident and prevalent patients with confirmed IPF diagnosis prospectively. Detailed data on patient characteristics, diagnostics, management, clinical outcomes, quality of life and resource utilization are recorded. It is planned to document 500 patients in 30 centers. The registry will contribute to the optimization of the management of IPF patients in the long term. © Georg Thieme Verlag KG.Stuttgart. New York.
引用
收藏
页码:2586 / 2588
页数:3
相关论文
共 27 条
[1]   Quality of health care .2. Measuring quality of care [J].
Brook, RH ;
McGlynn, EA ;
Cleary, PD .
NEW ENGLAND JOURNAL OF MEDICINE, 1996, 335 (13) :966-970
[2]   THE EPIDEMIOLOGY OF INTERSTITIAL LUNG-DISEASES [J].
COULTAS, DB ;
ZUMWALT, RE ;
BLACK, WC ;
SOBONYA, RE .
AMERICAN JOURNAL OF RESPIRATORY AND CRITICAL CARE MEDICINE, 1994, 150 (04) :967-972
[3]   Idiopathic pulmonary fibrosis: present understanding and future options [J].
du Bois, R. M. .
EUROPEAN RESPIRATORY REVIEW, 2011, 20 (121) :132-133
[4]   Validation of a new dyspnea measure - The UCSD shortness of breath questionnaire [J].
Eakin, EG ;
Resnikoff, PM ;
Prewitt, LM ;
Ries, AL ;
Kaplan, RM .
CHEST, 1998, 113 (03) :619-624
[5]  
European Commission, EURIPFNET EUR IPF NE
[6]  
European Medicines Agency (EMA), 2010, EMACHMP1151472011
[7]  
Gemeinsamer Bundesausschuss (G-BA), 2012, ZUS DOK AND ARZN AM
[8]  
Glatz U, 2011, DEUT MED WOCHENSCHR, V136, P621
[9]   Incidence and mortality of idiopathic pulmonary fibrosis and sarcoidosis in the UK [J].
Gribbin, J. ;
Hubbard, R. B. ;
Le Jeune, I. ;
Smith, C. J. P. ;
West, J. ;
Tata, L. J. .
THORAX, 2006, 61 (11) :980-985
[10]  
Guenther A, 2008, THORAX, V63, P841