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Level of purposeful hand function as a marker of clinical severity in Rett syndrome

We developed a measure of hand function, and then investigated relationships between hand function, type of MECP2 mutation, age and severity of symptoms.

Research

The early Human Capability Index (eHCI)

The Early Human Capability Index is a holistic measure intended to capture early child development across diverse cultures and contexts.

Parental experiences of scoliosis management

We investigated what parents thought about the ways to manage scoliosis and what they thought they needed to help them better manage their daughter's scoliosis.

Research

Review of Inclusive Preschool Program

Yasmin Adrienne Harman-Smith Gregory BA, BHlthSc(Hons), PhD BSocSci, MPhil Head, Early Years Systems Evidence; Head, Tenders Support Unit Project

Research

Genotype and sleep independently predict mental health in Rett syndrome: An observational study

Rett syndrome is a genetically caused neurodevelopmental disorder associated with severe impairments and complex comorbidities. This study examined predictors of anxiety and depression in Rett syndrome, including genotype.

Research

Social support helps protects against depressed mood in adolescence

The goals of the current study were to identify different trajectories of sadness from Grade 6 to 9 in Australian school students, and to explore the role that social support from school, teachers, friends and families play in supporting students’ mental health.

Research

Evaluation of the Learning+ Pilot Program

Yasmin Adrienne Harman-Smith Gregory BA, BHlthSc(Hons), PhD BSocSci, MPhil Head, Early Years Systems Evidence; Head, Tenders Support Unit Project

Research

qPCR assay optimisation for a clinical study comparing oral health risk in Rett syndrome

This study aimed to validate qPCR assays for specific microbiota, for use on dental plaque samples stored on Whatman FTA cards to compare relative oral health risk in Rett syndrome.

Research

Early Years Strategic Priority – Scoping and Mapping of the South Australian Early Years System

Yasmin Harman-Smith BA, BHlthSc(Hons), PhD Head, Early Years Systems Evidence; Head, Tenders Support Unit Yasmin.harman-smith@thekids.org.au Head,

Research

Decline in gross motor skills in adult Rett syndrome; results from a Danish longitudinal study

Longevity of individuals with neurodevelopmental diseases as Rett syndrome (RTT) has increased and many reach adulthood and old age. There is therefore a need to increase knowledge about the course of RTT in adults in order to improve medical care management and quality of life.

Research

Review of trends in disabilities, mental health disorders and complex needs among children and adolescents

The aim of the project was to provide the South Australian Department for Education with a synthesis of high-quality evidence on the population prevalence of various disabilities among school-aged children.

Research

Population Wide Monitoring of Child Health and Development in Tuvalu

Investigators: Alanna Sincovich Project description: The Pacific Early Age Readiness and Learning (PEARL) Programme, implemented by the World Bank,

Research

Patterns of sedentary time and ambulatory physical activity in a Danish population of girls and women with Rett syndrome

We aimed to: (1) describe the patterns of sedentary time and daily steps and (2) identify the association of individual and environmental characteristitics.

Research

Wellbeing and Engagement Collection (WEC) in the South Australian school system

The aim of the WEC is to help teachers, school leaders and policy makers better understand and support the wellbeing and engagement of their students.

Research

The Wellbeing and Engagement Collection (WEC): Promoting the importance of students’ wellbeing and mental health in schools

o help raise the profile of student wellbeing in the education system in Australia, The Kids Research Institute Australia and SA Department for Education through the Fraser Mustard Centre, set out to adapt and trial a population-level student wellbeing measure that could be used across the entire public and p

Research

Participation in the Wellbeing and Engagement collection in South Australian schools

In South Australian schools, students in Grade 4 to 12 are invited to participate in an annual survey about their wellbeing and engagement in school, referred to as the Wellbeing and Engagement Collection.

News & Events

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.

News & Events

Critical mass in rare diseases - an innovative internet approach

The internet is emerging as a valuable tool for scientists to gather data for critical research into rare diseases.