Journal
JOURNAL OF CYSTIC FIBROSIS
Volume 6, Issue 3, Pages 187-193Publisher
ELSEVIER SCIENCE BV
DOI: 10.1016/j.jcf.2006.07.002
Keywords
cystic fibrosis; database; registry
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It has recently been stated that a database is an essential tool in the management of CF. The purpose of this work is to create a specific database allowing optimal performance of storage, search and retrieval functions on patients with CF. A specific database was developed using a Windev licence, for application via Microsoft supported platforms or Intranet system. The database allows real-time point of care data management of medical, investigational and administrative data. It is currently being used in the 6 Belgian reference centres. It represents a useful tool for gathering information on routine clinical and lab data, bacteriology, treatments, complications and specific outcomes for clinical and research purposes. The ongoing evolution of the database includes enhancements toward research data orientation including comparison of patient data between different centres and completeness of the National CF registry questionnaire. A complimentary copy of the software can be provided to multidisciplinary accredited CF centres worldwide upon request. (C) 2006 European Cystic Fibrosis Society. Published by Elsevier B.V. All rights reserved.
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