Thursday 9 October 2014

First Impressions from Atlanta

Today sees the start of the North American Cystic Fibrosis Conference (NACFC), the largest cystic fibrosis gathering in the world, in Atlanta. We've sent four delegates from the Trust to the event and our first blog comes from Rebecca Cosgriff, our new Registry Lead, on her first impressions from being a first time attendee to NACFC
This is my first visit to Atlanta, the home of CNN and Coca Cola. But, more importantly, it's also my first time attending the North American Cystic Fibrosis Conference. After being appointed as Registry Lead back in August, this conference has been an excellent baptism of fire into a 4,000-strong sample of the international cystic fibrosis community.

The atmosphere is positively fizzing over with enthusiasm for helping people with cystic fibrosis to have the same opportunities as those without it. Much of the content over the coming days is rooted in the aspiration for people with CF to be held back no more by a cumbersome medical regime, discomfort, or fear.

As the person within the Cystic Fibrosis Trust responsible for the UK CF Registry, the database that records and reports on the health and care of people with CF, it's been great for me to meet international counterparts. The prelude day to the conference has seen a flurry of Registry-based activity, illustrating the importance of these projects to improve care and outcomes for people with cystic fibrosis.

First up was the Cystic Fibrosis Foundation's Registry Coordinator's luncheon, which saw presentations from the US Registry team on data quality, future plans, and research. It was great to see that that our ambitions for the UK CF Registry are aligned with theirs, with a little friendly rivalry helping to drive impact for people with cystic fibrosis. The dedication of the Registry coordinators was evident; something which is echoed by those responsible for entering and checking data in the UK. Some attendees had been participating in the US registry since its conception in the 1980s!

Later in the afternoon I was able to attend the inaugural CF Registry data harmonisation meeting; an initiative aiming to help international registries work together to evaluate care and detect ways to get the best outcomes. Work of this nature enabled the recent publication of a UK/US data comparison, which found important differences in the outcomes for paediatric patients in the two nations. The meeting saw registries from all over the world, including Brazil, Spain, Australia and of course the UK, represented. This further illustrates the commitment of Registry teams to enable the comparison of international data. We came away from the meeting with new priorities, and plenty of volunteers to form the expert groups that will seek to address them.

With the conference officially commencing tomorrow, I already feel I have the beginnings of a valuable global network, and plenty of great ideas, that can be used to maximise the benefits of the UK Registry when I return to the Trust next week. 

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