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Euro Huntington's disease network [logo]
Arbeitsgruppen - Motorischer Phänotyp -

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. Videos will be rated by an international panel of expert raters from EHDN and HSG (this project is funded by CHDI/HD-Therapeutics-Foundation and started in 2006).  
  2. Revised-UHDRS-TMS: To improve the sensitivity of the UHDRS-TMS to assess disease progression, patients in different stages of HD will be filmed at baseline and at a follow-up UHDRS-TMS examination. Expert raters will score each item of the UHDRS-TMS independently on the videos - blinded for time of assessment. A factorial analysis of the TMS subitems will be performed to identify redundant items and ‘difficult to score’ items (= items displaying high inter-rater variability). A revised version of the UHDRS-TMS will be proposed and tested prospectively in REGISTRY (this project is funded by CHDI/High-Q-Foundation and started in 2008).   
  3. Motor-Biomarkers (TRACK-HD): To develop, explore and prospectively test novel quantitative motor assessment tools that may be used as objective outcome measures in clinical trials in HD. Members of the WG contributed parts of a Quantitative Motor Assessment battery to TRACK-HD (www.track-hd.net). This project will be conducted in close cooperation with other workgroups (funded by CHDI/High-Q-Foundation since 2007).
  4. Motor Therapy in HD: To explore the role and benefit of different approaches of Motor Therapy (e.g., 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. First studies were initiated by members of the WG. A close collaboration is planned with the newly founded Physiotherapy WG (funded by EHDN 2008). 
(edited by Ralf Reilmann, January 27, 2009 - )

Leiter:

Raymund A.C. Roos, Prof. MD
Neurologist, Vorstand, Motorische Beurteilung, Arbeitsgruppensprecher Motor, Hauptverantw. Prüfarzt
Leiden University Medical Centre (LUMC), Neurology K5-Q
Anschrift: P.O. Box 9600
2300 RC Leiden
Nederland
Telefon: +31 71 5262197
Fax: +31 71 5248253
E-Mail: 
Prof. Dr. med. Jean-Marc Burgunder
Neurologist, Sprecher of Vorstand, Hauptverantw. Prüfarzt, Arbeitsgruppensprecher Motor
Universitätsspital Bern, Neurologie
Anschrift: Worbstrasse 312
3073 Bern-Gümligen
Schweiz
Telefon: +41 (0)31 352 20 70
Fax: +41 (0)31 351 80 70
E-Mail: 
Dr. med. Ralf Reilmann
Direktor, Arbeitsgruppensprecher Motor, Arbeitsgruppensprecher Neuroprotective Therapy, Hauptverantw. Prüfarzt
George-Huntington-Institut, Neurologie
Anschrift: Technologiepark Münster / Johann-Krane-Weg 27
48149 Münster
Deutschland
Telefon: +49 251 788-788-0
Fax: +49 251 788-788-88
E-Mail: 
Homepage: www.george-huntington-institut.de

Associated Language Area Coordinator (Lanco)

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