P081 Emerging Registry uses requires adaptable systems: reinventing the Australian Cystic Fibrosis Data Registry
نویسندگان
چکیده
منابع مشابه
Cystic fibrosis mortality: registry data of cystic fibrosis.
BACKGROUND The Cystic Fibrosis Foundation has been collecting mortality and other data on cystic fibrosis patients from over 100 U.S. clinical centers since 1966, and publishes annual reports of the data. Cystic fibrosis is an important autosomal recessive genetic disease, affecting multiple body systems, with disability and early mortality as very common complications. RESULTS Observed data ...
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Data Resource Profile: The UK Cystic Fibrosis Registry David Taylor-Robinson,* Olia Archangelidi, Siobhán B Carr, Rebecca Cosgriff, Elaine Gunn, Ruth H Keogh, Amy MacDougall, Simon Newsome, Daniela K Schlüter, Sanja Stanojevic and Diana Bilton; on behalf of the CF-EpinNet collaboration Department of Public Health and Policy, University of Liverpool, Liverpool, UK, National Heart and Lung Instit...
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OBJECTIVES To describe the demographics, clinical features and outcomes among people with cystic fibrosis (CF) in Australia and to estimate incidence of the disease. DESIGN AND SETTING Cross-sectional analysis using data from the Australian Cystic Fibrosis Data Registry for 2009. MAIN OUTCOME MEASURES Numbers of diagnoses, pulmonary and anthropometric measurements, microbiological culture r...
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Periodic evaluation and monitoring the health and economic outcome of joint replacement surgery is a common and popular process under the territory of joint registries in many countries. In this article we introduce the methodology used for the foundation of the National Iranian Joint Registry (IJR) with a joint collaboration of the Social Security Organization (SSO) and academic research de...
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The international literature shows that the demography of cystic fibrosis (CF) is changing, with patients increasingly surviving into adulthood. As they age, patients with CF become more susceptible to specific non-pulmonary chronic diseases. In this study, adult data from the CF Registry of Ireland (CFRI) was used to determine the prevalence and associated features of these diseases. 104 (25.7...
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ژورنال
عنوان ژورنال: Journal of Cystic Fibrosis
سال: 2019
ISSN: 1569-1993
DOI: 10.1016/s1569-1993(19)30375-3