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Towards evidence based care for Rett syndrome: a research model to inform management of rare disordersHelen Jenny Leonard Downs MBChB MPH BApplSci (physio) MSc PhD Principal Research Fellow Program Head, Development and Disability +61 419 956 946 08
Research
TREK2School StudyGina 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 approachRecent 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 conditionsAmy Yael Asha Finlay-Jones Perry Parkinson BPsych(Hons), MPsych(Clinical), MHealthEcon, PhD (Clin Psych) BPsych (Hons) MPsych (Clin) PhD BPsych (Hons
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
We reviewed literature and RettNet to explore firsthand perspectives of gastrointestinal issues in Rett Syndrome, then developed recommendations with experts.
We interviewed 21 families with a daughter with Rett Syndrome about aspects of their daughters' lives that were satisfying or challenging to them.
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 sample size, we investigated the relationships between epilepsy and genotype, and the impact of medications used on seizure management.