Towards Evidence-based Care For Rett Syndrome: A Research Model To Inform Management Of Rare Disorders
Funder
National Health and Medical Research Council
Funding Amount
$458,046.00
Summary
Rett syndrome is a rare but serious genetic neurological disorder affecting mainly girls and often complicated by spinal curvature and poor growth. This project will use national register data collected over 16 years to examine change in functional abilities and progression of the scoliosis curve. It will develop guidelines and improve processes to assist with diagnosis and will comprehensively evaluate the surgical treatments used in the management of scoliosis and growth problems.