grant

Towards evidence-based care for Rett syndrome: a research model to inform management of rare disorders [ 2011 - 2014 ]

Also known as: Towards evidence-based care in a rare disorder

Funded by National Health and Medical Research Council
Managed by The University of Western Australia
Managed by University of Western Australia
Provided by   National Health and Medical Research Council

Research Grant

[Cite as https://purl.org/au-research/grants/nhmrc/1004384]

Researchers: A/Pr Helen Leonard (Principal investigator) ,  A/Pr Peter Jacoby ,  Dr Carolyn Ellaway ,  Dr Jenny Downs ,  Mr Ian Torode
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Brief description 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.

Funding Amount $AUD 458,046.78

Funding Scheme Project Grants

Notes Standard Project Grant

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Subjects
Care for Disabled | Medical and Health Sciences | Public Health and Health Services | Rett syndrome | cost-effectiveness | diagnosis | enteral nutrition | equity | evaluation studies | longitudinal cohort study | motor function | outcomes research | spinal health |
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