This working group will address the following issues:
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).
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).
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).
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 -
Raymund A.C. Roos, Prof. MD
Neurologist, Hoved Styre, Motor Rater, Lead Facilitator Motor, Principal Investigator Leiden University Medical Centre (LUMC), Neurology K5-Q
P.O. Box 9600 2300 RC Leiden Nederland
+31 71 5262197
+31 71 5248253
Prof. Dr. med. Jean-Marc Burgunder
Neurologist, Chair of Hoved Styre, Principal Investigator, Lead Facilitator Motor Universitätsspital Bern, Neurologie
Worbstrasse 312 3073 Bern-Gümligen Schweiz
+41 (0)31 352 20 70
+41 (0)31 351 80 70
Dr. med. Ralf Reilmann
Direktor, Lead Facilitator Motor, Lead Facilitator Neuroprotective Tx, Principal Investigator, Hoved Styre George-Huntington-Institut, Neurologie
Technologiepark Münster / Johann-Krane-Weg 27 48149 Münster Deutschland