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Health activities driven by remote Indigenous communities may be key to the sustainable and successful treatment and prevention of a potentially fatal disease, a study has found.

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If there’s one thing modern researchers and health professionals now understand, it’s that for so many diseases and conditions affecting children and adolescents, early intervention is crucial.

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Data on Western Australian children’s health, learning, development and social characteristics will be mapped using geospatial technology so that community leaders and service providers can identify the priority issues for their children.

The Australian Rett Syndrome Study is based at The Kids Research Institute Australia located in Subiaco, Western Australia. This study was established in 1993.

Funded by the International Rett Syndrome Foundation, this international online database examines the clinical features and genetic characteristics.

One of the many reasons for setting up the International CDKL5 Disorder Database was to learn more about this condition.

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

This study used information from international Rett syndrome database to investigate the relationship between clinical characteristics and different mutations.

Using information from the Australian Rett Syndrome database, we coded symptoms according to severity scales and grouped by type and location of mutation.

Therefore, we wanted to compare the features of girls and women with a C-terminal deletion with those with other MECP2 mutations.