EU Dystonia Survey Maja Relja Movement Disorders Centre Department of Neurology School of Medicine University of Zagreb 10000 Zagreb, Croatia Brussels 2018

European network for the study of dystonia syndromes BM1101 2011-2015 COST Domain - Biomedicine and Molecular Biosciences (BMBS)

Organisation/structure: Action BM1101 European Network for the Study of Dystonia MC WG1 WG2 WG3 WG4 Two representatives per participating countries Elects Chair and Vice-Chair Appoints WG Coordinators and Co-Coordinators Management and coordination of the Action Meets once a year BM1101

* 1. Study participants - European network for the study of dystonia - 24 countries: 1 respondent / country BE - Belgium BG - Bulgaria DE - Germany DK - Denmark EL - Greece ES - Spain FR - France HR - Croatia HU - Hungary IE - Ireland IL - Israel IT - Italy LV - Latvia MK - R. of Macedonia NL - Netherlands NO - Norway PL - Poland PT - Portugal RO - Romania RS - Serbia SE - Sweden SI - Slovenia SK - Slovakia UK - United Kingdom *

Valadas et al Eur J Neurol 2016 - COST Action BM 1101- Aims Verify the management of DS around Europe Documentation of management strategies, facilities and expertise availability Implementation of measures to improve the management of DS Exploratory Survey Valadas et al Eur J Neurol 2016

Recognizing dystonia Dystonia is an odd movement disorder However, not every odd movement is dystonia Dystonia is the most striking and grotesque of all neurological disorders D. Denny-Brown 1960

Aims: To assess the chalenges patients face in accessing correct diagnosis To assess the chalenges patients face in accessing treatments To measure satisfaction with the treatments DE Survey

Q2 What is your gender? Base: 1156 respondents M Relja Brussels 2018

Q3 What age are you? Base: 1156 respondents M Relja Brussels 2018

Q4 What type of dystonia do you have? Hemi-facial spasm 1% Oromandibular 2% …and others for small % Base: all Base: all 1156 respondents Multiple answers possible

Q5 How long have you been diagnosed as having dystonia? Base: 1156 respondents M Relja Brussels 2018

Q12 How interested are you in extra information about your medical condition? Base: 1156 respondents

Q13 If interested where do you look for information? * Incl. a variety of sources each mentioned by only a handful Base: 1156 respondents Multiple answeres possible

Q6 How long did it take you to get a correct diagnosis after the first appearance of symptoms? Base: 1156 respondents

Q7 What was your experience when you first visited your GP with symptoms? Base: 1156 respondents M Relja Brussels 2018

Q8 Do you receive any treatment? Base: 1156 respondents

Q9 What treatment did you receive? Base: 1156 respondents M Relja Brussels 2018

Q10 How long did it take to receive treatment? Base: 1156 respondents M Relja Brussels 2018

Q11 Does your dystonia affect your…..? Every aspect of life 5% No effect/Controlled 3% Driving 2% Walking/mobility 2% Mental state 2% …and others for small % Base: all Base: 1156 respondents Multiple answers possible

Thank you