The EUROSCA Natural History Study
Status: Recruiting
Location: See all (16) locations...
Study Type: Observational
SUMMARY
The key goals of EUROSCA-NHS is to determine and compare the rate of disease progression in SCA1, SCA2, SCA3 and SCA6 including determination of the order and occurrence of non-ataxia symptoms, assessment of activities of daily living (ADL) and quality of life (QoL), and identification of predictors of disease progression and survival.
Eligibility
Participation Requirements
Sex: All
Minimum Age: 18
Healthy Volunteers: f
View:
• Progressive, otherwise unexplained ataxia
• Positive genetic testing for SCA1, SCA2, SCA3, and SCA6
• Written informed consent by the patient or his legal agent
Locations
Other Locations
Austria
Department of Neurology, Medical University, Innsbruck
ACTIVE_NOT_RECRUITING
Innsbruck
Belgium
Université Libre de Bruxelles (ULB), Neurology Service - ULB Hôpital Erasme, ULB Laboratory of Experimental Neurology
ACTIVE_NOT_RECRUITING
Brussels
France
Hôpital de la Pitié-Salpêtrière, Département de Génétique
ACTIVE_NOT_RECRUITING
Paris
Germany
Department of Neurology, St. Josef Hospital, University Hospital of Bochum
ACTIVE_NOT_RECRUITING
Bochum
Department of Neurology, University of Bonn
RECRUITING
Bonn
Department of Neurology, University Clinic Essen, University of Duisburg-Essen
ACTIVE_NOT_RECRUITING
Essen
Department of Neurology, University of Frankfurt
ACTIVE_NOT_RECRUITING
Frankfurt
Department of Neurodegeneration and Hertie-Institute for Clinical Brain Research, University of Tübingen
ACTIVE_NOT_RECRUITING
Tübingen
Hungary
Department of Medical Genetics, University of Pecs
ACTIVE_NOT_RECRUITING
Pécs
Department of Neurology, Zala County Hospital
ACTIVE_NOT_RECRUITING
Zalaegerszeg
Italy
Fondazione-IRCCS Istituto Neurologico Carlo Besta
ACTIVE_NOT_RECRUITING
Milan
Department of Neuroscience, Federico II University Naples
ACTIVE_NOT_RECRUITING
Naples
Netherlands
Radboud University Medical Center, Department of Neurology, Donders Institute for Brain, Cognition, and Behaviour
ACTIVE_NOT_RECRUITING
Nijmegen
Poland
Institute of Psychiatry and Neurology
ACTIVE_NOT_RECRUITING
Warsaw
Spain
University Hospital Marqués de Valdecilla (IDIVAL), University of Cantabria
ACTIVE_NOT_RECRUITING
Santander
United Kingdom
Institute of Neurology
ACTIVE_NOT_RECRUITING
London
Contact Information
Primary
Thomas Klockgether, Prof. Dr.
thomas.klockgether@ukb.uni-bonn.de
+4922828715736
Backup
Heike Jacobi, Dr.
heike.jacobi@ukb.uni-bonn.de
Time Frame
Start Date: 2005-07
Estimated Completion Date: 2050-07
Participants
Target number of participants: 400
Treatments
Spinocerebellar ataxia type 1,2,3 and 6
Spinocerebellar ataxias (SCA) are autosomal dominantly inherited progressive ataxia disorders. An epidemiological study performed in the Netherlands found a prevalence of 3.0 : 100,000 (van de Warrenburg et al. 2002). The SCA´s are genetically and clinically heterogeneous disorders with SCA1, SCA2, SCA3 and SCA6 being the most frequent genotypes worldwide. While SCA1, SCA2 and SCA3 have a complex phenotype, SCA6 patients usually present with pure cerebellar ataxia (Schols et al. 2004). Although precise knowledge of the rate of disease progression is a prerequisite for the biometrical design of future therapeutical trials, prospective studies of the natural history of SCA´s have not been performed. Similarly, the occurrence and evolution of accompanying non-ataxia symptoms have not been studied prospectively.
Related Therapeutic Areas
Sponsors
Leads: Ataxia Study Group