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Safe start to life for East Pilbara babies thanks to Journey Together Initiative

Born two weeks early, six-month-old Braxton Lewis’ entry to the world could have been vastly different if not for a service dedicated to improving pregnancy outcomes for Aboriginal women in WA’s East Pilbara.

Port Hedland – Kumaparniku Wraparound Services Research Collaboration

Early in the consultation phase of the project, local Elders through Hedland Aboriginal Strong Leaders, education representatives and others identified that vulnerable families needed help navigating and accessing local support services that were already available in Port Hedland.

MECP2 duplication syndrome (MDBase)

MECP2 duplication syndrome is a rare disorder neurodevelopmental disorder that, unlike Rett syndrome, mostly affects boys.

Research snapshots

Our research covers a broad range of areas from the influence of mutation type on health outcomes to factors impacting on the lives of familes.

Altered attainment of developmental milestones

Regression, including the loss of previously learned skills, such as hand function and communication skills, is one of the most suggestive features of Rett synd

Validating the Rett Syndrome Gross Motor Scale

Our study investigated the quality of measurements obtained using the Rett Syndrome Gross Motor Scale.

Early determinants of fractures in Rett syndrome

We wanted to compare the frequency of fracture episodes, and factors associated with a fracture, in females with Rett syndrome, compared to general population.

Surgical fusion of early onset severe scoliosis increases survival in Rett syndrome: a cohort study

Our study investigated the impacts of spinal fusion on survival and the risk of developing respiratory infections in females with Rett syndrome.