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Our Research

We aim to share our research findings with families so that they may better understand Rett syndrome and the future for their family.

Parental perspectives on the communication abilities of their daughters with Rett syndrome

We interviewed 17 parents with a daughter with Rett syndrome to gain their perspectives on how their daughter communicates and barriers.

Clinical severity and X-chromosome inactivation

For this study, we examined how Rett syndrome characteristics can be affected by X-inactivation for 2 of the common types of mutation - p.R168X and p.T158M.

Feeding experiences and growth status in a Rett syndrome population

We set out to describe the feeding difficulties and nutrition of girls with Rett syndrome and to examine what factors may be influencing their nutrition.

Longitudinal hand function in Rett syndrome

Therefore, we used video data to examine changes in hand function over time. We also investigated what other factors might influence these changes.

Research

Racial discrimination and child and adolescent health in longitudinal studies: A systematic review

This review emphasises the need to gain evidence for the mechanisms linking early racism exposure to adverse health outcomes in later life

Research

Timeliness of signal detection for adverse events following influenza vaccination in young children: a simulation case study

Active vaccine safety surveillance leading to rapid detection of a safety signal would likely have resulted in earlier suspension of Fluvax from the vaccination programme

Research

The Impact of Externally Worn Diabetes Technology on Sexual Behavior and Activity, Body Image, and Anxiety in Type 1 Diabetes

Wearable technologies impact upon sexual activity and this influences the decision to adopt the technology

Research

Influenza epidemiology in patients admitted to sentinel Australian hospitals in 2017: the Influenza Complications Alert Network (FluCAN)

This report summarises the epidemiology of hospitalisations with laboratory-confirmed influenza during the 2017 influenza season