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The Sibling Snapshot Project

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Research

"What about us?"- the drawbacks of current bruxism assessment criteria in evaluating vulnerable groups

Jenny Helen Kingsley Downs Leonard Wong BApplSci (physio) MSc PhD MBChB MPH MBBS, MPH, MMedStat Head, Child Disability Principal Research Fellow

Research

Oral parafunction and bruxism in Rett syndrome and associated factors: An observational study

To explore patterns of parafunction, and bruxism, and its relationships with genotype and snoring in individuals with Rett syndrome.

Research

Implementing telehealth support to increase physical activity in girls and women with Rett syndrome-ActivRett: protocol for a waitlist randomised controlled trial

Individuals with Rett syndrome (RTT) experience impaired gross motor skills, limiting their capacity to engage in physical activities and participation in activities. There is limited evidence of the effectiveness of supported physical activity interventions. This study aims to evaluate the effects of a telehealth-delivered physical activity programme on physical activity, sedentary behaviour and quality of life in RTT.

Research

Prevalence and onset of comorbidities in the CDKL5 disorder differ from Rett syndrome

There were differences in the presentation of clinical features occurring in the CDKL5 disorder and in Rett syndrome.

Research

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

We investigated the impact of spinal fusion on survival and risk of severe lower respiratory tract infection in Rett syndrome.

Research

Parental perspectives on the communication abilities of their daughters with Rett syndrome

Perspectives of parents are integral to the assessment of communication abilities and inform communication interventions for girls and women with Rett Syndrome

Parental origin of mutations

We hypothesised that MECP2 mutations occur predominantly on the male derived X chromosome.

The range of expression of symptoms in girls and women with Rett syndrome

We wanted to describe the range and variability in the expression of symptoms in girls and women with Rett syndrome.

News & Events

Aboriginal women lead design of maternal and child healthcare model

A group of 19 Aboriginal women from South Australia, along with researchers from The Kids Research Institute Australia, have developed a culturally responsive, evidence-based model of care to support Aboriginal women with cardiometabolic complications in pregnancy in SA.

News & Events

Rich data to highlight crucial turning points for intervention to close the gap in Aboriginal health

A multi-disciplinary team of researchers will use more than 40 years of data to pinpoint crucial areas that could be “turning points” in development where intervention could contribute to closing the gap in Aboriginal health in Australia.

News & Events

Aboriginal-led survey to better understand the mental health of young Aboriginal LGBTQA+ people

A project, lead by Aboriginal and Aboriginal LGBTQA+ researchers examining the mental health of young Aboriginal and Torres Strait Islander LGBTQA+ people, is launching a nation-wide survey, to help drive meaningful change for the community.

News & Events

WA Aboriginal Child Health Survey preserved for future generations

The landmark Western Australian Aboriginal Child Health Survey has been placed into archiving at the State Library of Western Australia to be preserved for future generations.

Research

Ngulluk Moort, Ngulluk Boodja, Ngulluk Wirin (Our Family, Our Country, Our Spirit) Out-of-Home Care Study

We are working with the leadership and staff at foster care agencies and community members to provide information about cultural connection, and cultural activity and resources for Aboriginal children living in non-Aboriginal care arrangements.