Dystonia IMPACT Qualitative Interview Study: Version 1
Research type
Research Study
Full title
Improving Measurement and Priorities for Assessment in Clinical Trials of childhood-onset Dystonia (Dystonia IMPACT): Qualitative Interview study
IRAS ID
331167
Contact name
Hortensia Gimeno
Contact email
Sponsor organisation
Queen Mary University of London
Clinicaltrials.gov Identifier
G-002757, Funder's reference number
Duration of Study in the UK
0 years, 9 months, 0 days
Research summary
Childhood-onset hyperkinetic movement disorders, including dystonia, are a group of conditions which cause involuntary muscle contractions which make everyday activities difficult and significantly impact individuals’ lives. However, there are challenges in clinical management as usual care is variable and is not always orientated towards what matters most to patients and their families. Additionally, there is a lack of outcome tools which measures what is most important to children and their families, and this impacts on the development and delivery of interventions. This study aims to begin to address this gap by exploring the lived experiences of children and young people with hyperkinetic movement disorders and their parents/carers in order to understand their views on what is important to measure to inform the future development a core outcome set for interventional trials. Children with hyperkinetic movement disorders aged 6-18 years old and their parent/carers will be recruited from hospital and community settings over a 10-month period. Community research champions will also support recruitment of families from groups that are typically underrepresented in research. Children and/or their parent/carers will be invited to participate in a single interview, lasting approximately 1 hour. Creative methods will be used to support children who are non-verbal to also participate. Participants will be asked about what matters most to them or their children in terms of their movement disorder and their goals across the domains of the 6 F’s framework (Function, Family, Fitness, Friends, Fun, Future).
REC name
London - Camden & Kings Cross Research Ethics Committee
REC reference
25/LO/0150
Date of REC Opinion
20 May 2025
REC opinion
Further Information Favourable Opinion