Dystonia IMPACT study

Richard_Scope

DYSTONIA IMPACT STUDY UPDATE

The Dystonia IMPACT Qualitative Study explores what matters most to children and young people living with dystonia and other hyperkinetic movement disorders, and to their families.

We are pleased to share that since opening, the study has recruited 27 parent/carers and 15 children and young people, bringing us over halfway to our top target of 80 participants.

We are continuing to recruit families across the UK and would particularly welcome hearing from:

• Families of children with genetic or idiopathic dystonia

• Children and young people who communicate verbally and non-verbally

Participation is supported through creative methods and augmentative and alternative communication (AAC) tools, helping ensure all voices are heard. We can also support interviews with interpreters.

Families who are interested in taking part, or who would like to find out more, can register their interest here:

Qualtrics Survey | Qualtrics Experience Management

Alternatively, the research team can be contacted at:

dystoniaimpact@qmul .ac.uk | 07542 170 649

We would like to sincerely thank our recruiting sites for their continued support and collaboration: Barts Health NHS Trust Shooting Star Children's Hospices University Hospitals Bristol and Weston NHS Foundation Trust Betsi Cadwaladr University Health Board Rainbows Hospice for Children and Young People Whittington Health Oxleas NHS Foundation Trust Richard Cloudesley School Chestnut Tree House East Anglia's Children's Hospices (EACH) St Oswald's Hospice Bradford Teaching Hospitals NHS Foundation Trust Cardiff and Vale University Health Board Hull University Teaching Hospitals NHS Trust Julia's House Children's Hospices Martin House Children's Hospice

We are incredibly grateful to the families who have already shared their time and experiences.

A special shout-out to Hannah Scott, PhD, for all her work on this and the rest of the children's group, Rob Molloy Claire Higgins Katherine (Kate) Knighting Alice Doohan Ovi Ghadigaonkar Barbara G., working hard to ensure all voices are heard and we maximise inclusion ++

Please feel free to share this post with families or colleagues who may be interested.

#Dystonia #ChildhoodDystonia #CerebralPalsy #Children #PaediatricResearch #DisabilityResearch #InclusiveResearch #AAC

Dystonia UK, Dystonia Europe, Scope, Cerebral Palsy Scotland