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Euro Huntington's disease network [logo]
Functional Ability - Meetings - Meeting September 2008 -

1st October, 2008

Dear colleagues

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.

Tel: +44 (0)118 378 5550
Fax: +44 (0)118 378 6715
_____________________________________________________

MEETING INFORMATION

Date:        1 October 2008 (Wednesday)

Time:        2:00pm – 7:00pm
        Followed immediately by dinner

Venue:        
        Part 1
        2:00-3.30pm
        Lecture theatre B01, Clore Management Centre, Birkbeck,             25-27
Torrington Square, London WC1E 7JL
http://www.bbk.ac.uk/maps/howtogethere       

        Part 2
        4:00-7:00pm
          The Old Board Room, Ground Floor (near main entrance),                 National
Hospital for Neurology and Neurosurgery, Queen                Square, London
WC1N 3BG            
http://www.uclh.nhs.uk/Our+hospitals/National+Hospital+for+Neurology+and+Neurosurgery.htm

        Dinner
        7:00pm at Old Amalfi
http://mywestend.co.uk/westend/restaurants-review-the-old-amalfi.htm

IMPORTANT: Please email both me ( ) and Peter Gudge
( ) to let us know what TIME you plan on
ARRIVING at the meeting. Please also say when you will be LEAVING so I
have a head count for dinner.

For some ideas re accomodation see:
http://www.uclh.nhs.uk/NR/rdonlyres/851D3FB5-0894-461C-991D-90F1BD441E10/55804/hotellistNHNN.pdf