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Research
International workshop: what is needed to ensure outcome measures for Rett syndrome are fit-for-purpose for clinical trials? June 7, 2023, Nashville, USAThe 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
Measuring use and cost of health sector and related care in a population of girls and young women with Rett syndromeThis study measured use and cost of health sector and related services in Rett syndrome and effects of socio-demographic, clinical severity and genetic...
We aim to share our research findings with families so that they may better understand Rett syndrome and the future for their family.
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
Meeting with families in ChinaProf Helen Leonard and Dr Jenny Downs recently visited Shenzhen, China to meet Chinese families and child neurologists from the Shenzhen Children's Hospital.
With the help of clinicians and families who have children with Rett syndrome, our research aims to improve understanding of Rett syndrome.
We investigated the factors that may affect the age at diagnosis for girls and woman with Rett syndrome.
Learn more about our people - the dedicated researchers and staff working to address Rett syndrome, CDKL5 and other related disorders.
Rett Syndrome Association of Australia and ANZACRett are two family-oriented organisations.
Publications from 2016 dating back to 1993 of AussieRett researchers, showing the research work into Rett syndrome and related disorders.