The utility of respiratory surveillance in Childhood Neuromuscular disease

Children with neuromuscular disease face a high burden of respiratory complications, from sleep-disordered breathing through to progressive ventilatory failure. Our team is pursuing several projects to improve how we detect and monitor this decline early, before it becomes clinically apparent. These include understanding:

i) the natural history of respiratory impairment in those diagnosed early in life due to newborn screening;

ii) how best to track changes in respiratory physiology, using imaging, lung function and sleep studies, and the response to potentially life-changing treatments that have become available in recent years;

iii) the consumer experience of, and attitudes towards, respiratory surveillance and its impact of overall treatment burden. 

For more information about this project, please contact Dr Tamara Blake