Home-based Complex Intervention for Children With Ataxia Telangiectasia

Ataxia telangiectasia is a rare, genetic and progressive condition with no known cure. Therapies present a mainstream management option and have the potential to offer optimisation of fitness and general health. This pilot RCT aims to explore the effectiveness, feasibility, and acceptability of a co-produced home-based complex exercise intervention for children with ataxia telangiectasia. The study was designed through broad consultation with a collaborative of children and young people with A-T including family members, therapists, clinicians and researchers, called the A-Team collaborative (https://osf.io/edzn3/)

Inclusion Criteria:Diagnosis of A-T confirmed clinicallyAged 4-11 yearsAble to walk independently (with no or only intermittent support) over 10 metres and stand unaided for 1 minuteAble to communicate in English either independently or with the assistance of their parent/legal guardian (where parent/guardian is able to communicate in English) or using a translator arranged by the participating familyHas the ability to assent and parents/legal guardians have the ability to give consent on their child's behalfExclusion Criteria:Those with other/additional diagnoses thought by the study team to probably compromise the intervention, e.g. with significant intellectual disabilityCurrently undergoing cancer therapies or acutely unwellChildren who are participants of another trial/intervention programmeNon-UK based families