What’s the study about?
Children with neuromuscular conditions experience breathing problems during sleep due to muscle weakness. Participants will undergo various tests to see whether we can diagnose this problem early, rather than relying on the current method of simply asking about symptoms. We hope that through earlier diagnosis and treatment of muscle weakness during sleep, we can prevent future lung failure.
Who can take part?
Any child with a neuromuscular condition who attends Perth Children’s Hospital Neuromuscular Clinic can be involved in the project. Participation in this research is voluntary.
What does participation involve?
Information for the study will be collected over a 12-month period from the time of enrolment, via lung function tests and questionnaires to be completed during participants’ regular clinical appointments with the Neuromuscular Clinic. Some extra visits may be required (eg. If the participant requires a sleep study).
What is involved at each visit?
(i) Lung Function Testing – this can include blowing into a tube, taking deep breaths, breathing slowly for several minutes at a time, coughing into a tube, and sniffing through a tube.
(ii) Patient Information – general health information of the participant collected during the clinic visit with the doctor.
(iii) Motor Function Testing – includes various tasks such as walking, standing up, climbing and using the hands. These tests will be performed by a physiotherapist or doctor.
(iv) Quality of life questionnaire – information about the quality of life and mood of the participant and main carer, including feelings, worries or concerns, and how your family is coping.
What this project means to the Muscular Dystrophy community
Muscular Dystrophy WA is passionate about improving the quality of life of people living with muscular dystrophy. This research project has the potential to improve clinical care, assist in finding better ways to manage conditions and to better understand the factors that can positively impact the quality of life. In real terms, this project gives hope, it allows people to feel valued, be heard, to know that their experience matters and they have the opportunity to shape future health and social well-being.
How can I find out more?
Download the Participant Information Sheet
Contact Jasmine Grdosic on 08 6319 1622 or by email at neuromuscularresearchSMB@telethonkids.org.au
This research is in partnership with The Kids Research Institute Australia, Curtin University Stanford University, Muscular Dystrophy Western Australia, Child and Adolescent Health Service.
This research is funded by Muscular Dystrophy Western Australia and the Duchenne Parent Project.