More from Birmingham. Just come from a meeting of 12 clinicians from 7 European countries*, along with Cynthia from the A-T Children’s Project, where they agreed some practical steps to start sharing information and experiences on a regular basis. What was really positive was not so much the actions agreed, as the very strong sense of commitment to making this work that everyone at the meeting showed. There was a real eagerness to find out more about the work and experience of colleagues. Next steps include the sharing of (non-individualised) data on patients, assessment of options for establishing an A-T registry and the gathering of suggestions for the programme for the next clinical research meeting, to be held in the Netherlands in October 2014. Having so many A-T specialists sitting round a table and planning together so enthusiastically, feels like a real step forward. *France, Germany, Israel, Italy, Netherlands, Norway and UK
Posted on: Wed, 31 Jul 2013 14:40:08 +0000
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