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Title Beyond the borders of motor symptoms: Quality of life and non-motor symptoms in patients with movement disorders
Keywords quality of life movement disorders Non-motor symptoms
Researchers prof. dr. M.A.J. de Koning-Tijssen
dr. T.J. de Koning
drs. E.R. Timmers
S.S. Polet
Nature of the research Retrospective cohort study with data from various groups of patients with movement disorders
Fields of study neurology
Background / introduction
Movement disorders can involve an excess of movement (hyperkinetic movement disorders, e.g. myoclonus, tremor), a paucity of movement (hypokinetic movement disorders, e.g. parkinsonism), or having problems with coordination of movement (ataxia).
This research project will specifically focus on hyperkinetic movement disorders with various etiologies involved, including metabolic disorders. Within the field of movement disorders, still little is known about the presence of non-motor symptoms (e.g. depression, anxiety, sleep, pain) and the quality of life in patients.
The project will be embedded in the national and European expertise center Movement Disorders Groningen (www.movementdisordersgroningen.com) and the research line of Prof. Marina AJ de Koning-Tijssen.
Research question / problem definition
1. What is the degree of non-motor symptoms and quality of life in different groups of patients with movement disorders, and how do those groups differ?
2. Which questionnaires are used most frequently in clinical practice and how are the questions in the non-motor questionnaires influenced by the motor symptoms of the patients?
Workplan
During the past years we have collected data from different groups of patients with hyperkinetic movement disorders. These data include both the motor symptoms but also the non-motor symptoms. We want to fuse all the data and compare the degree of non-motor symptoms and quality of life among these groups of patients, and will also relate this to to their motor symptoms.
During the project an overview will be made of the questionnaires that are used by researchers in the expertise centre. The student will analyse the data and focus on which questionnaires are influenced by the motor scores (e.g. asking for anxiety includes questions like : do you tremble when you are scared? Patients with tremor always tremble so this is an inappropriate question). The student will enquire which problems are encountered when using those questionnaires. In addition, based on this problems a literature search is performed to make additional recommendations for questionnaires to be used in clinical practice.
We are looking for an student writing his/her master thesis (stage wetenschap) who is interested in the field of neurology. The student will be able to join activities at the department such as weekly research meetings in which current research is presented and where advise can be asked within the research group.
References
Zutt R, Smit M, Zijl van J, Gelauff J, Stone J, Tijssen MAJ. The presence of depression and anxiety do not distinguish between functional jerks and cortical myoclonus. Parkinsonism and Related Disorders 2017; 45: 90-93.

Timmers ER, Smit M, Kuiper A, Bartels AL, Veen van der S, Stouwe van der MMA, Santens P, Bergmans B, Tijssen MAJ. Myoclonus-dystonia: Distinctive motor and non-motor phenotype from other dystonia syndromes. Parkinsonism and Related Disorders 2019; 69: 85-90.
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