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Working Groups - Motor Phenotype -
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Agenda

This working group will address the following issues:
  1. UHDRS-TMS teaching video: To guide and to improve the clinical assessments as performed by motor raters in EHDN, the working group will compile a teaching video for the UHDRS total motor score (TMS). The video will offer a "UHDRS-Library" illustrating the different scores defined in the UHDRS-TMS by clinical examples. It will also provide an instructional section teaching how to perform the UHDRS examination and how to rate the different subitems (this project is funded by High-Q-Foundation and started in August 2006).  
  2. Revised-UHDRS-TMS: To improve the sensitivity of the UHDRS-TMS to assess disease progression, a factorial analysis of the TMS subitems based on data from REGISTRY and other databases will be performed to identify redundant items and ‘difficult to score’ items (=  items displaying high variability). A revised version of the UHDRS-TMS will be tested prospectively in EHDN, e.g. in REGISTRY (this project is funded by High-Q-Foundation and started in August 2006).   
  3. Motor-Biomarkers: To develop, explore and prospectively test novel quantitative motor assessment tools that may be used as objective outcome measures in clinical trials in HD in the setting of multicenter clinical trials, e.g. REGISTRY. This project will be conducted in close cooperation with other workgroups (application for funding in preparation).
  4. PT and OT in HD: To explore the role and benefit of different approaches of physiotherapy and occupational therapy in clinical trials in HD applying evidence based prospective study designs. The motor workgroup recognizes the need to provide evidence for the efficacy of PT and OT in HD, since limited budgets in healthcare systems will challenge the availability of such resources (application for funding in preparation). 
(edited by Ralf Reilmann, Mar. 17, 2008 - )

Lead facilitator:

Raymund A.C. Roos, Prof. MD
Neurologist, Executive Committee, Motor Rater, Lead Facilitator Motor, Principal Investigator
Leiden University Medical Centre (LUMC), Neurology K5-Q
Postal address: P.O. Box 9600
2300 RC Leiden
Nederland
phone: +31 71 5262197
fax: +31 71 5248253
e-mail: 
Prof. Dr. med. Jean-Marc Burgunder
Neurologist, Chair of Executive Committee, Principal Investigator, Lead Facilitator Motor
Universitätsspital Bern, Neurologie
Postal address: Worbstrasse 312
3073 Bern-Gümligen
Schweiz
phone: +41 (0)31 352 20 70
fax: +41 (0)31 351 80 70
e-mail: 
Dr. med. Ralf Reilmann
Direktor, Lead Facilitator Motor, Lead Facilitator Neuroprotective Tx, Principal Investigator, Executive Committee
George-Huntington-Institut, Neurologie
Postal address: Technologiepark Münster / Johann-Krane-Weg 27
48149 Münster
Deutschland
phone: +49 251 788-788-0
fax: +49 251 788-788-88
e-mail: 
homepage: www.george-huntington-institut.de

Associated Language Area Coordinator (Lanco)

Lisanne Mütze, Germany

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