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DOI: 10.1055/s-0032-1327244
Charakteristika und Versorgung der idiopathischen Lungenfibrose
Rationale für das INSIGHTS-IPF-RegisterCharacteristics and management of idiopathic pulmonary fibrosis: INSIGHTS-IPF registryPublikationsverlauf
Publikationsdatum:
27. November 2012 (online)
![](https://www.thieme-connect.de/media/dmw/201249/lookinside/thumbnails/10.1055-s-0032-1327244-1.jpg)
Zusammenfassung
Die Idiopathische pulmonale Fibrose (IPF), eine Manifestationsform der chronischen interstitiellen Pneumonie, ist mit einer Prävalenz von ca. 2–29 Fällen pro 100000 Personen eine seltene Erkrankung. Die derzeitigen Behandlungsoptionen sind beschränkt, und die mittlere Überlebenszeit der neu diagnostizierten (meist älteren) Patienten liegt bei nur 2–3 Jahren. Da in europäischen Ländern Daten zur Versorgung der Patienten lückenhaft sind, wurde mit INSIGHTS-IPF in Deutschland ein neues Register initiiert, in dem inzidente und prävalente Patienten mit gesicherter IPF-Diagnose prospektiv dokumentiert werden. Es werden detaillierte Daten zu Patientencharakteristika, diagnostischen Verfahren, Therapie, klinischen Ereignissen, Lebensqualität und Ressourcenverbrauch erfasst. Geplant ist, in ca. 30 Zentren 500 Patienten zu dokumentieren. Das Register wird längerfristig einen Beitrag zur verbesserten Versorgung von Patienten mit IPF leisten.
Abstract
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.
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