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Research

The NDIS at ten years: designing an equitable scheme for the next decade

Jenny Downs BApplSci (physio) MSc PhD Program Head, Development and Disability 08 6319 1763 Jenny.Downs@thekids.org.au Head, Child Disability Areas

Research

Stability and change in self-reported risk and resilience factors associated with mental health of siblings of individuals with and without neurodevelopmental conditions over 15 months

Siblings of individuals with neurodevelopmental conditions (NDCs) are a minority population at higher genetic and environmental risk of poorer neurocognitive and psychosocial outcomes compared to siblings of individuals without NDCs.

Research

Novel approaches to measuring cognition in individuals with severe to profound functional impairment: A pilot study in SCN2A-related disorder

Valid clinical outcome assessments with the ability to capture meaningful aspects of neurodevelopment for individuals with neurogenetic conditions associated with profound functional impairments are lacking, yet critical for clinical care and clinical trial readiness.

Research

Ovulation induction and subfertile untreated conception groups offer improved options for interpreting risks associated with ART

To identify and characterise appropriate comparison groups for population studies of health outcomes in ART-conceived births: ovulation induction (OI), subfertile untreated and fertile natural conceptions. Our secondary objective was to examine whether known risks of pregnancy complications and adverse birth outcomes in ART births are elevated in comparison with subfertile (untreated and OI) conception groups.

Research

“Broken fragments or a breathtaking mosaic”: A mixed methods study of self-reported attributes and aspirations of siblings of individuals with and without neurodevelopmental conditions

Siblings of individuals with neurodevelopmental conditions (NDCs) experience distinct challenges and have unique strengths compared to siblings of individuals without NDCs.

Research

Exploring enablers and barriers to accessing health services after a fall among people with intellectual disability

There is an urgent need to develop high-quality falls prevention services for older adults with intellectual disability

Research

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

High levels of sedentary time and low daily step counts in a Danish population of females with Rett syndrome

Research

Addressing challenges in gaining informed consent for a research study investigating falls in people with intellectual disability

This study describes how an informed consent process was developed for people with intellectual disability and how it is working in a current study

Research

A systematic review of the biological, social, and environmental determinants of intellectual disability in children and adolescents

This systematic review aimed to identify the most important social, environmental, biological, and/or genetic risk factors for intellectual disability.