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. 2018 Feb 1;47(1):9-10e.
doi: 10.1093/ije/dyx196.

Data Resource Profile: The UK Cystic Fibrosis Registry

David Taylor-Robinson  1 , Olia Archangelidi  2 , Siobhán B Carr  3 , Rebecca Cosgriff  4 , Elaine Gunn  4 , Ruth H Keogh  5 , Amy MacDougall  2 , Simon Newsome  5 , Daniela K Schlüter  6 , Sanja Stanojevic  7 , Diana Bilton  2 ; CF-EpinNet collaboration
Affiliations

Data Resource Profile: The UK Cystic Fibrosis Registry

David Taylor-Robinson et al. Int J Epidemiol. .
No abstract available

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Figures

Figure 1
Figure 1
Cumulative count of individuals captured in the registry and number with annual review data in each year (left panel). Count of deaths and losses to follow-up (right panel).
Figure 2
Figure 2
Spaghetti plot for weight z-score versus age, illustrating the longitudinal nature of the data collected in the UKCF Registry. Each dot (n = 117 482) represents a weight z-score measure on a person in the dataset. The smoothed cross-sectional population average is shown in red (95% confidence intervals) and 50 randomly selected individual trajectories are in black.
See this image and copyright information in PMC

References

    1. Cystic Fibrosis Trust. UK Cystic Fibrosis Registry 2015 Annual Data Report. London: CFT, 2015.
    1. Dodge JA, Lewis PA, Stanton M, Wilsher J. Cystic fibrosis mortality and survival in the UK: 1947–2003. Eur Respir J 2007;29:522–26. - PubMed
    1. Elborn JS, Shale DJ, Britton JR. Cystic fibrosis: current survival and population estimates to the year 2000. Thorax 199;46:881–85 . - PMC - PubMed
    1. Mehta G, Sims EJ, Culross F, McCormick JD, Mehta A. Potential benefits of the UK Cystic Fibrosis Database. J R Soc Med 2004;97(Suppl 44):60–71. - PMC - PubMed
    1. Cystic Fibrosis Trust. Apply for Data From the UK CF Registry. 2017. https://www.cysticfibrosis.org.uk/the-work-we-do/uk-cf-registry/apply-fo... (11 September 2017, date last accessed).

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