This site is being built to share information, updates and results of research with ALL 14-19year old teenagers living with a Neuromuscular Condition in Australia and New Zealand.
Thank you to all Young Adults with NMD, their families, patient organisations, Allied Health and Medical professionals who have helped to develop this study!
This research has been approved by the University of Notre Dame Human Research Ethics Committee (ref no 014122F). We will begin recruitment via the Patient Organisations in September 2014.
The Ethics Committees of Tertiary Children’s Hospitals across Australia will review this study to facilitate recruitment via the respiratory and/or neuromuscular clinics.
We’ll be underway soon!