Project Information

Designing ‘My A-Team Pack’ for children and young people with Ataxia Telangiectasia  

Scientific Lead: Munira Khan & Dr Lisa Bunn (University of Plymouth)

Costs: £89,862.48 over 36 months funded by Action for A-T

This project was funded by Action for A-T and supported by the AT Society. It completed in 2024.

In recognition that people living with AT require co-ordinated multidisciplinary care to manage their complex needs, which can often lead to families working with a range of different professionals and feeling burdened by the amount of information and coordination of care that they manage, the study aimed to co-produce an AT patient resource to help. The team called the resource ‘My A-Team Pack’ for children and young people with AT, to promote person-centered care and self-management. To understand what would be useful, the team explored the views of children with AT and parents of children and young people with AT about the utility, acceptability, design, and content of this pack. They then developed a pack which represents a positive step towards providing families a viable resource for effective record keeping, symptoms management, and information sharing with relevant professionals involved in the care and management of their child’s condition.

Further information can be seen here:
Khan et al., The Cerebellum: “Care and Management of Children with A-T by Nurses and Allied Health Professionals.” https://doi.org/10.1007/s12311-023-01555-z

Khan et al., Orphanet Journal of Rare Diseases: “My A–T pack: a qualitative study of the utility, acceptability, design, and content of a family-designed and owned information pack relevant to the lives of children and young people living with ataxia telangiectasia.” https://doi.org/10.1186/s13023-025-03919-6