UK CF Registry Meeting - 2018

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The Studio

7 Cannon Street


B2 5EP

United Kingdom

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Event description


The annual UK CF Registry Meeting provides the ideal opportunity for all those who work with the UK Cystic Fibrosis Registry to understand new Registry tools, the use of its data and the impact of current research output.

Expert speakers from within the CF community will lead the morning’s plenary sessions, while the afternoon provides a choice of interactive and practical workshops that will focus upon the areas that apply most to your day-to-day work with the Registry.

Registration will open from 09.30, with the meeting commencing at 10.30, and will close by 16.00.


  • Welcome & Introduction from the Cystic Fibrosis Trust
    Keith Brownlee, Director of Impact, Cystic Fibrosis Trust

  • Annual Report Preview
    Dr Siobhán Carr, UK CF Registry Chair and CF Paediatrician, Royal Brompton Hospital

  • Registry Team Update
    Rebecca Cosgriff, UK CF Registry Lead, Cystic Fibrosis Trust

  • Registry-based Research Overview
    Dr Martin Wildman, UK CF Registry Research Committee Chair & and Adult CF Physician

  • Lunch & Networking

  • Workshops (see below)

  • International Collaboration
    Denise Mak, Director of Data and Analystics, Cystic Fibrosis Canada

  • Drug Safety Studies
    15:00 –15:25
    Susan Charman, UK CF Registry Statistican, Cystic Fibrosis Trust

  • Closing Remarks
    Dr Siobhán Carr, UK CF Registry Chair and CF Paediatrician, Royal Brompton Hospital

  • Close of Meeting & Refreshments
    15.30 - 16.00

AFTERNOON WORKSHOPS (Please request a workshop space when registering):

Workshop A: Understanding your centre-level data

Learn about interpreting your centre’s own CF Registry data, and how to use it to improve care

Suitable for: Clinical team members, Data managers

Susan Charman, Senior Statistician, Andrew Lee, Statistician & Siobhán Carr, CF Paediatrician

Workshop B: Software training

Learn about the latest updates the UK CF Registry and take the opportunity to provide feedback to the development team

Suitable for: Anyone who uses the UK CF Registry to enter data or generate reports

Mary Yip, Development Manager, Kieran Earlam, Registry Administrator, CF Trust

Workshop C: Improving Data Quality

Develop your understanding of how to enter the highest quality data to the Registry, and minimise those queries at year-end!

Suitable for: Anyone who enters data onto the UK CF Registry

Elaine Gunn, UK CF Registry Data Manager, Roisin Connon, Analyst

Workshop D: Registry Journal Club

Discuss a selection of Registry-based publications from the last year, and put forward suggestions for future research themes

Suitable for: Clinical team members, Researchers

Martin Wildman, UK CF Registry Research Committee Chair, Caroline Elston, Adult CF Physician


What are my transport/parking options for getting to and from the event?

The venue is five minutes walk from Brimingham Central railway station, with NCP car parks available at Birmingham High Street and Grand Central.

What accommodation is available near the venue?

The venue is close to the Burlington Macdonald Hotel, Travel Lodge Birmingham and Premier Inn Birmingham.

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The Studio

7 Cannon Street


B2 5EP

United Kingdom

View Map

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