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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.

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.

Research

A preliminary investigation of the effects of prenatal alcohol exposure on facial morphology in children with Autism Spectrum Disorder

While early exposure to alcohol may influence the development of facial structures, it does not appear to be associated with ASD phenotypic variability

Research

AMEND study protocol: A case-control study to assess the long-term impact of invasive meningococcal disease in Australian adolescents and young adults

This study aims to address this evidence gap by assessing the clinical, physical, neurocognitive, economic and societal impact of invasive meningococcal disease

Research

Antibiotics versus topical antiseptics for chronic suppurative otitis media

Treatment of chronic suppurative otitis media with topical antibiotics probably results in an increase in resolution of ear discharge compared with boric acid

Research

Prevalence of chronic wet cough and protracted bacterial bronchitis in aboriginal children

Strategies to address reasons for and treatment of chronic wet cough and protracted bacterial bronchitis in young Aboriginal children in remote north Western Australia are required