You are invited to the 2nd European Huntington’s Disease Network (EHDN) Functional Assessment Working Group meeting to be held in London on 1 October 2008. This date has been chosen to coincide with when Jeremy Hobart and John Zajicek are available to present and discuss the UHDRS functional data from REGISTRY.
The meeting will comprise two parts. For part 1, we will join the UK DeNDRON Methodology meeting (at Birkbeck), where Jeremy, John and team will be presenting the item analyses of the UHDRS functional data from REGISTRY. There will then be a related talk on measurement scales in Parkinson's before a general discussion. You are also invited to attend other interesting talks on this topic earlier on in the day, courtesy of the DeNDRON Methodology group - info on the full programme is here: http://www.dendron.org.uk/cr/methodology_autumn_meeting
For part 2, we will adjourn together (to nearby Queens Square) for a more detailed and focused discussion of the UHDRS functional data in view of items that could be discarded/ammended for REGISTRY 3. We will also be discussing possible items that could be included, following on from discussions initiated in the last meeting - see working documents posted on our EHDN Functional Ability website. Raymund Roos and his team have kindly agreed to present some data on the BOSH scale, and possibly also preliminary data on some simple functional tasks. Anyone who would like to present data along these lines would be welcome to do so - please email me by 19 Sept so I can include this in the meeting agenda.
Below is some information on how to get to the meeting, and attached is the EHDN travel policy document and reimbursement form.
We have invited the facilitators of other related working groups as we hope to develop collaborative links in refining and extending the functional assessment tools we are currently using for REGISTRY. If you (or a representative) are not able to come, we would still value the perspective of your working group, and would be very grateful if you could communicate this to us.
If there is any feedback in the way of comments, questions etc, or if you would like to present any data, please do get back to me.
Please email (by 19 Sept) both me (
) and Peter Gudge (
) to register and advise what time you will be arriving and leaving on 1 October for catering purposes.
I look forward to an interesting and productive meeting where we can discuss how to move things forward in this area.
Best wishes Aileen _____________________________________________________
Dr Aileen K Ho Department of Psychology School of Psychology and Clinical Language Sciences University of Reading Earley Gate Reading RG6 6AL U.K.