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We developed a measure of hand function, and then investigated relationships between hand function, type of MECP2 mutation, age and severity of symptoms.

We investigated what parents thought about the ways to manage scoliosis and what they thought they needed to help them better manage their daughter's scoliosis.

When you build routines into your day to increase uptime, it doesn’t only affect the person with Rett syndrome; it affects the whole family.

AussieRett is the Australian Rett syndrome research study. We collect information on Australian individuals with Rett syndrome from both families and clinicians

News & Events

Helen and Jenny visited Shenzhen in the south of China twice during 2013 to talk with clinicians and families at the Shenzhen Children's Hospital.

Young Minds Matter is the second Australian Child and Adolescent Survey of Mental Health and Wellbeing.

Research

The P2X7R is highly expressed on the macrophage cell surface, and activation of infected cells by extracellular ATP has been shown to kill intracellular bacte

Research

This study investigated the relationships between fracture risk and commonly used AEDs in Rett syndrome.

Research

Using medical and other data from private citizens without obtaining the consent of those citizens has been a taboo of statisticians and of society

Research

This paper reports on how the summit was designed and on some of the ideas and concerns that emerged within this dialogical space of cooperative inquiry.