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

Funding Activity

Website
http://purl.org/au-research/grants/nhmrc/1004384

Funding Status
Closed

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Funded Activity 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.

Funded Activity Details

Start Date: 01-01-2011

End Date: 01-01-2014

Funding Scheme: Project Grants

Funding Amount: $458,046.00

Funder: National Health and Medical Research Council

Research Topics

ANZSRC Field of Research (FoR)

Care for Disabled

ANZSRC Socio-Economic Objective (SEO)

There are no SEO codes available for this funding activity

Other Keywords

Rett syndrome | cost-effectiveness | diagnosis | enteral nutrition | equity | evaluation studies | longitudinal cohort study | motor function | outcomes research | spinal health

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