Clinical validation of the Dystonia NMS Questionnaire (DNMS Quest)
Research type
Research Study
Full title
Clinical validation of the Dystonia NMS Questionnaire (DNMS Quest) in patients with primary dystonia
IRAS ID
162452
Contact name
Kallol Ray Chaudhuri
Contact email
Sponsor organisation
King's College London
Duration of Study in the UK
1 years, 2 months, days
Research summary
Dystonia is a movement disorder characterized by involuntary motor manifestations with muscle contractions causing abnormal postures and often repetitive movements. These motor symptoms often interfere with the correct performance of voluntary movements. Adult-onset primary dystonia (AOPD) is the most common form of dystonia and includes cervical dystonia, involvement of the eyelids (blepharospasm) or hands (task-specific or focal hand dystonia). Next to the motor symptoms growing evidence is gained about the importance of non motor symptoms (NMS) in patients with dystonia (Stamelou, Edwards et al. 2012). Little is known about the presentation, the distribution and the frequency of NMS in patients with dystonia. Furthermore any correlation of NMS profile with age, disease duration or severity of motor dystonia is not yet specified. NMS presentation can range from sensory symptoms like pain and dysaesthesia, sleep disorders, cognitive impairment to neuropsychiatric symptoms. Some NMS like sleep disturbances, neuropsychiatric and mood problems, pain, emotional well-being and psychosocial functioning are partially covered in different dystonia rating scales (e.g. Cervical Dystonia Impact Scale, Toronto Western Spasmodic Torticollis Rating Scale, Craniocervical Dystonia Questionnaire). There are currently no validated bedside scales to characterise and measure NMS in patients with dystonia. A holistic questionnaire for pure NMS assessment in dystonia is essential for high quality epidemiological studies and clinical trials to address the burden of NMS, treatment and control of therapy of NMS in dystonia. In this study we will field test the first NMS Questionnaire specific to AOPD – called the Dystonia NMS Questionnaire (DNMS Quest) - based on relevant responses from 150 people with AOPDs (study group) and 100 control subjects matched for age and sex (control group). Additionally participants will undergo clinical assessments such as demographic variables, clinical disease defining variables, assessment of motor severity and validated scales for specific non motor symptoms and quality of life assessments.
REC name
East Midlands - Nottingham 2 Research Ethics Committee
REC reference
15/EM/0106
Date of REC Opinion
23 Apr 2015
REC opinion
Further Information Favourable Opinion