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Conceptualizing a quality of life framework for girls with Rett syndrome using qualitative methods

We interviewed 21 families with a daughter with Rett Syndrome about aspects of their daughters' lives that were satisfying or challenging to them.

Longitudinal bone mineral content and density in Rett syndrome and their contributing factors

This study measured changes in bone density over time using dual energy x-ray absorptiometry (DEXA). Lean tissue or muscle mass (LTM) was also measured.

Using a large international sample to investigate epilepsy in Rett syndrome

Using a large sample size, we investigated the relationships between epilepsy and genotype, and the impact of medications used on seizure management.

Seizures in Rett syndrome: an overview from a one-year calendar study

We collected information on a monthly basis on the patterns of seizures and medications of 162 girls in the Australian Rett Syndrome study over a calendar year.

Publications

Publications from 2016 dating back to 1993 of AussieRett researchers, showing the research work into Rett syndrome and related disorders.

News & Events

New ten-year action plan on FASD provides welcome support

Researchers into fetal alcohol spectrum disorder (FASD) have welcomed the Federal Government’s announcement of a ten-year national action plan that will drive efforts to reduce the impact of FASD on individuals, families and communities.

News & Events

The Kids study hopes to help kids with neuromuscular disorders sleep more easily

Mackenzie was 10 months old when her parents, Jodie and Scott, were given the life-changing news that their daughter would never walk.

News & Events

Australia’s first regenerative and genetic medicine program for children’s lung disease

A new program that uses cutting edge stem cell techniques to repair lung damage in children will be established at The Kids Research Institute Australia with support from the Telethon-Perth Children’s Hospital Research Fund (TPCHRF).

News & Events

Expert researchers converge on Broome to tackle health challenges in Northern Australia

Over 100 researchers and health professionals from around Australia have united in Broome this week to address the major health battles facing people living in the tropical north of the country.

News & Events

NHMRC grants to benefit vulnerable and disadvantaged children and young people

Two leading The Kids Research Institute Australia researchers will use more than $1.1 million in National Health and Medical Research Council funding to improve outcomes for some of the world’s most vulnerable children and young people.