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Database a crucial tool helping to fill the CDKL5 information void

The Kids Research Institute Australia disability researcher, Associate Professor Helen Leonard, played an important role in the identification of the differences that define CDD, thanks to her extensive experience researching Rett syndrome and running an Australian online database tracking Rett cases.

Nourish resources good for the body and the soul

For thousands of children around Australia with intellectual and other disabilities, the process of eating can be traumatic, posing challenges that veer from uncomfortable to life threatening.

Missing Piece study guiding new strategies to prevent rheumatic fever

A Kimberley study seeking to better understand Strep A in remote settings is helping to guide new approaches to prevent acute rheumatic fever (ARF) – an auto-immune response that typically begins with a sore throat and causes high fever, tiredness and swollen joints.

Beacon of hope for navigating online world

In a world where TikTok dances and Minecraft adventures take centre stage, kids are spending more time online than ever before.

Helping to create safe spaces for young LGBTQA+ Aboriginal people

The Walkern Katatdjin (Rainbow Knowledge) project has produced a suite of resources to help services become more inclusive.

Unlocking the secret that could save millions of newborn lives

The veteran tuberculosis vaccine BCG has puzzled scientists for decades. Now, The Kids researchers have not only unlocked part of the secret to its success in saving the lives of newborns, but they’re at the forefront of global efforts to test its ability to fight COVID-19.

Lightening the leukaemia load for kids with Down syndrome

Kids born with Down syndrome are at high risk of an array of health problems – including issues with sight, hearing, heart defects, bone complications, immune disorders and learning difficulties.

Research

How Families Manage the Complex Medical Needs of Their Children with MECP2 Duplication Syndrome

MECP2 duplication syndrome (MDS) is a rare, X-linked, neurodevelopmental disorder resulting from the duplication of the methyl-CpG-binding protein 2 (MECP2) gene. The clinical features of MDS include severe intellectual disability, global developmental delay, seizures, recurrent respiratory infections, and gastrointestinal problems. The aim of this qualitative study was to explore how the parents of children with MDS manage their child's seizures, recurrent respiratory infections, and gastrointestinal symptoms, and the impact on them as parents.

Research

Health service utilisation for acute respiratory infections in infants graduating from the neonatal intensive care unit: a population-based cohort study

Despite advances in neonatal intensive care, babies admitted to Neonatal Intensive Care Units (NICU) suffer from adverse outcomes. We aim to describe the longer-term respiratory infectious morbidity of infants discharged from NICU using state-wide population-based linked data in Western Australia.

Research

Excess Mortality Among People With Rheumatic Heart Disease in Australia

Jonathan Carapetis AM AM MBBS FRACP FAFPHM PhD FAHMS Executive Director; Co-Head, Strep A Translation; Co-Founder of REACH 08 6319 1000 contact@