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Transition to adulthood for young people with intellectual disability: the experiences of their families

A number of themes emerged from the qualitative data which included parents' views and concerns about the capacity of their young adult to adapt and change to life in adulthood

A fine balance and a shared learning journey: Exploring healthcare engagement through the experiences of youth with Neuromuscular Disorders

Explored Youth with Neuromuscular Disorders perceptions of health, health behaviors and healthcare engagement

Improving health access for children and families living with intellectual disability

A project led by The Kids Research Institute Australia’s child disability team will seek to reduce potentially preventable hospitalisations and build health literacy for children and young people with intellectual disability.

Feeding change helps keep kids with intellectual disability out of hospital

Children with intellectual disability who underwent gastrostomy – a feeding tube placed into the stomach – had better overall health and fewer hospitalisations for all causes except acute respiratory illnesses, research led by The Kids Research Institute Australia has found.

Nine out of ten young people in detention found to have severe neuro-disability

Nine out of ten incarcerated youth examined by The Kids researchers as part of a ground-breaking study had some form of neuro-disability.

The CDKL5 Disorder

One of the many reasons for setting up the International CDKL5 Disorder Database was to learn more about this condition.

Zika threat leads to Australian-first microcephaly study

WA Researchers have conducted an Australian-first study to determine the prevalence of microcephaly, in preparation of any future outbreak of the Zika virus.

Children with disabilities 3 times more likely to be maltreated but risk varies by disability type

A new study has found children with disabilities are 3 times more likely to be maltreated compared to other children but that risk varies by type of disability.

Huge hospital burden for kids with intellectual disabilities

New research from the Telethon Institute has shown that children with an intellectual disability are up to 10x more likely to be admitted to hospital.

Rare Diseases

While individual diseases are rare, as a group, rare diseases are common. Recent estimates suggest that between 3% and 6% of the world’s population are affected by rare disease.