- Super sorry to not have the full text of this article. But I'm pretty sure most CF docs subscribe to this journal, so ask your clinic if they have a copy of this article...it looks super interesting in my opinion...
- J Cyst Fibros. 2009 May 4. [Epub ahead of print]
An overview of international literature from cystic fibrosis registries: 1. Mortality and survival studies in cystic fibrosis.
Buzzetti R, Salvatore D, Baldo E, Forneris MP, Lucidi V, Manunza D, Marinelli I, Messore B, Neri AS, Raia V, Furnari ML, Mastella G.
Italian Cystic Fibrosis Research Foundation, Verona, Italy.
Patient registries are organized systems of data collection for scientific, clinical or health strategy purposes. Aims of our review were to document scientific literature based on data and information from cystic fibrosis (CF) registries; to understand which clinical problems have been addressed and for which of these the studies concerned have correctly answered the questions raised (i.e. a methodological critique) and to identify clinical issues in need of further investigation. The review included primary studies starting from a formally constituted CF registry of at least national level, using data from the registry to evaluate research hypotheses. This article is an overview of the research undertaken, focusing in detail on the issues of mortality and survival. The studies considered here focused mainly or secondarily on survival in CF, the aim being to ascertain an improving trend, identify any prognostic factors and, in some cases, attempt to provide a predictive model of survival.