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

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

3. Organisation/structure: Action BM1101 European Network for the Study of DystoniaMC
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

4. * 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 *

5. 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

6. 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

7. 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

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

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

10. 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

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

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

13. 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

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

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

16. Q8 Do you receive any treatment?
Base: 1156 respondents

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

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

19. 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

22. Thank you