Skip to content
The Kids Research Institute Australia logo
Donate

No results yet

Search

Research

Towards evidence based care for Rett syndrome: a research model to inform management of rare disorders

Helen Jenny Leonard Downs MBChB MPH BApplSci (physio) MSc PhD Principal Research Fellow Program Head, Development and Disability +61 419 956 946 08

Research

TREK2School Study

Gina Trapp BHSc(Hons1A), RPHNutr, PhD Honorary Research Associate Gina.Trapp@thekids.org.au ARC DECRA Fellow & Head of Food and Nutrition Research Dr

Research

Understanding autistic LGBTQA+ young people’s experiences of trauma: An intersectional approach

Recent research has consistently found significantly higher rates of gender and sexual diversity reported in the autistic population compared to the non-autistic population, and higher rates of autism reported in LGBTQA+ populations compared to cisgender and heterosexual populations

Research

Uplift: Online self-compassion training for young people with chronic conditions

Amy Yael Asha Finlay-Jones Perry Parkinson BPsych(Hons), MPsych(Clinical), MHealthEcon, PhD (Clin Psych) BPsych (Hons) MPsych (Clin) PhD BPsych (Hons

Aspects of speech-language abilities are influenced by MECP2 mutation type in girls with Rett syndrome

This study explored relationships between speech and language abilities in girls with Rett syndrome and how they may be affected by the type of genetic mutation

Gastrointestinal dysmotility in Rett syndrome

We reviewed literature and RettNet to explore firsthand perspectives of gastrointestinal issues in Rett Syndrome, then developed recommendations with experts.

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.