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Research

This study measured use and cost of health sector and related services in Rett syndrome and effects of socio-demographic, clinical severity and genetic...

Research

The clinical, research and advocacy communities for Rett syndrome are striving to achieve clinical trial readiness, including having fit-for-purpose clinical outcome assessments. This study aimed to (1) describe psychometric properties of clinical outcome assessment for Rett syndrome and (2) identify what is needed to ensure that fit-for-purpose clinical outcome assessments are available for clinical trials.

Research

Individuals with Rett syndrome (RTT) experience impaired gross motor skills, limiting their capacity to engage in physical activities and participation in activities. There is limited evidence of the effectiveness of supported physical activity interventions. This study aims to evaluate the effects of a telehealth-delivered physical activity programme on physical activity, sedentary behaviour and quality of life in RTT.

Research

This study measured use and cost of health sector and related services in Rett syndrome and effects of socio-demographic, clinical severity and genetic factors

Our research covers a broad range of areas from the influence of mutation type on health outcomes to factors impacting on the lives of familes.

News & Events

Prof Helen Leonard and Dr Jenny Downs recently visited Shenzhen, China to meet Chinese families and child neurologists from the Shenzhen Children's Hospital.

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

Rett Syndrome Association of Australia and ANZACRett are two family-oriented organisations.

With the help of clinicians and families who have children with Rett syndrome, our research aims to improve understanding of Rett syndrome.

Learn more about our people - the dedicated researchers and staff working to address Rett syndrome, CDKL5 and other related disorders.