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How can clinical ethics guide the management of comorbidities in the child with Rett syndrome?

This paper reviews the disorder Rett syndrome and evidence for the management of scoliosis and poor growth within a clinical ethics framework

Disability-adjusted life years (DALYs) for 291 diseases and injuries in 21 regions, 1990-2010: A systematic analysis

Measuring disease and injury burden in populations requires a composite metric that captures both premature mortality and the prevalence and severity of...

MRCF launches Perth-based biotech developing new treatment for Cystic Fibrosis

A The Kids Research Institute Australia spin-off company has received $20 million from the Medical Research Commercialisation Fund to develop a promising new therapy for the treatment of Cystic Fibrosis.

Global research for rare disorder

The Kids Research Institute Australia researchers set out on a worldwide search to find out all they could about Rett syndrome, establishing databases and creating awareness.

Intubation study points the way to safer surgery in babies

Perth researchers who were involved in an international study which examined two different techniques used to intubate newborns and young babies during surgery expect the findings to lead to a change in global practice.

Development of an International Database for a Rare Genetic Disorder: The MECP2 Duplication Database (MDBase)

The natural history of MECP2 duplication syndrome (MDS), a rare X-linked neurodevelopmental disorder with an estimated birth prevalence of 1/150,000 live births, is poorly understood due to a lack of clinical data collected for research. Such information is critical to the understanding of disease progression, therapeutic endpoints and outcome measures for clinical trials, as well as the development of therapies and orphan products.

Hypertensive diseases of pregnancy predict parent-reported difficult temperament in infancy

These data suggest that the link between maternal hypertensive diseases of pregnancy and child behavioral development begins in the first year of life.

Developing and characterising juvenile models of aggressive paediatric brain cancers for the evaluation of novel immunotherapies.

While profound treatment responses have been realised using immunotherapy for some cancer types, this is yet to be seen for paediatric brain cancer patients.

Finding new, safer and targeted therapies for paediatric brain cancer that amplify responses to radiation therapy

Radiation therapy is an essential component of brain cancer treatment. However, the high doses currently required are extremely damaging to the growing brains and bodies of children.

Early Years Systems Evidence

The Early Years Systems Evidence (EYSE) team specialises in working in partnership with governments and service providers, with a distinct focus on improving the life chances of children in Australia.