Friday 12 October 2012

Elaine Gunn, CF Registry Manager blogs from NACFC

Here I am in Florida and looking forward to find out about the US Registry on cystic fibrosis and finding out if we can make any further improvements to our own registry here in the UK. At 1230 yesterday it was the US Registry Co-ordinators Meeting. 
This annual meeting is really interesting for me as it brings together all the people who are involved with all aspects of the US registry.  It is great to know that all the same queries and questions we experience in the UK are almost mirrored in the US albeit on a larger scale. 
The CFF Registry Team lead had planned an interesting programme and kicked off by giving an overview of where the US registry was up to.  Having undergone a complete overhaul in 2010 with the introduction of a new version - which was not without some problems encountered by the users - it was now working really well.
It was encouraging to see the availability of new reporting tools for centre outcomes, quality improvements and research, what a great resource and it has taken their registry to a whole new level.
There were 27,000 people with CF registered on the US registry in 2011 and their report will be available at this conference and will be published on the CFF website
There was a presentation on data entry queries and a new initiative around patient outcomes and an audit programme to ensure high quality data was being entered. 
The session finished with a mention of the UK US collaboration work which we are involved in. We are looking at different comparisons between the two countries.  Some of this work is to be presented later on in the conference – watch this space!

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