Actively Recruiting
Validation of a Quality of Life Assessment Tool in Adult Generalized Dystonodyskinetic Syndromes Treated by Continuous Electrical Neuromodulation
Led by University Hospital, Montpellier · Updated on 2024-06-04
146
Participants Needed
1
Research Sites
188 weeks
Total Duration
On this page
AI-Summary
What this Trial Is About
In spite of a growing interest in the evaluation of health-related quality of life in movement's disorders management, there is no tool specifically dedicated to dystonia and related syndromes that measures both the objective severity of the handicap and the patient's feelings about the surgical treatment in terms of subjective improvement. We have been working for several years at the bedside of patients operated on in the " pathologies cérébrales résistantes " Unit on the development of a related questionnaire to assess both the motor severity and the patients' feelings about the evolution of their disease under Deep Brain Stimulation (DBS). The self-questionnaire designed would allow to a certain extent to get away from the two gold standards currently used in the field, i.e. the Burke, Fahn \& Marsden Dystonia Rating Scale (BFMDRS) and the SF-36, thus facilitating the evaluation and allowing a homogenization of the practices for the different implanting centers on the french territory.
CONDITIONS
Official Title
Validation of a Quality of Life Assessment Tool in Adult Generalized Dystonodyskinetic Syndromes Treated by Continuous Electrical Neuromodulation
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Adults between 18 and 80 years old
- Patient with generalized dystonodyskinetic syndrome treated by continuous electrical neuromodulation and followed in the unit
- Affiliated to the French social security system
You will not qualify if you...
- Non-French speaker
- Physically unable to answer the questionnaire and no trusted person to help
- Severe cognitive impairment (MoCA <10, MDRS <123, PM-38 <70)
- Lack of informed consent
AI-Screening
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Trial Site Locations
Total: 1 location
1
CHU Montpellier
Montpellier, Hérault, France, 34295
Actively Recruiting
How is the study designed?
Study Type
INTERVENTIONAL
Masking
NONE
Allocation
NA
Model
SINGLE_GROUP
Primary Purpose
SUPPORTIVE_CARE
Number of Arms
1
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