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.
Remote Aboriginal families and carers of children with disabilities. The project intends to explore the challenges that Aboriginal families who have children with disabilities experience when living in remote communities. Living in a community with family supports is important for the wellbeing, health and spirituality of Aboriginal people in the Ngaanyatjarra Pitjantjara Yankunytjatjara (NPY) lands. However, the NPY Women’s Council are concerned that this is a significant challenge for families ....Remote Aboriginal families and carers of children with disabilities. The project intends to explore the challenges that Aboriginal families who have children with disabilities experience when living in remote communities. Living in a community with family supports is important for the wellbeing, health and spirituality of Aboriginal people in the Ngaanyatjarra Pitjantjara Yankunytjatjara (NPY) lands. However, the NPY Women’s Council are concerned that this is a significant challenge for families and carers of children with disabilities. Project results will be used to propose models for supporting children with disabilities and their families and caregivers to live good lives in their communities. The outcomes are expected to inform service redesign to allow Aboriginal people to fully benefit from the National Disability Insurance Scheme.Read moreRead less