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

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

Abstract Background Ataxia telangiectasia (A–T) is a rare genetic and progressive condition, primarily affecting the neurological, immunological, and pulmonary systems. In the absence of a cure, people living with A–T require co-ordinated multidisciplinary care to manage their complex needs. This of...

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Bibliographic Details
Main Authors: Munira Khan, Elizabeth Cassidy, Tracey Parkin, Amanda Wallace, Bernie Carter, William Whitehouse, James Munro, Joanne Paton, A.-Team Collaborative, Lisa Bunn
Format: Article
Language:English
Published: BMC 2025-08-01
Series:Orphanet Journal of Rare Diseases
Subjects:
Ataxia telangiectasia
Cerebellar ataxia
Multidisciplinary management
Multidisciplinary care
Patient held health records
Patient held notes
Online Access:https://doi.org/10.1186/s13023-025-03919-6
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https://doi.org/10.1186/s13023-025-03919-6

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