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, Dec. 14, 2006 -
)
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
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Motor Phenotype