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Experience of gastrostomy using a quality care framework: The example of Rett syndrome

We investigated our data from family questionnaires to see how feeding difficulties related to age, the type of MECP2 mutation, and the use of gastrostomy.

Level of purposeful hand function as a marker of clinical severity in Rett syndrome

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

Parental experiences of scoliosis management

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.

Caring for caregivers

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.

Participate in Research

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

News & Events

Visit to Shenzhen, China

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.

Impact of mental disorders

Young Minds Matter provides information on the prevalence and impacts of mental disorders on children and adolescents in Australia.

Adolescent service use

Young people 13 years and older provided information on the health, school, internet and telephone services they used, as well as barriers to seeking help.

About the Vaccine Trials Group

The Vaccine Trials Group was formed in March 1999 to provide a coordinated approach to the development, delivery, assessment and promotion of vaccines.

The SUPER Study

We are looking for healthy young adults to take part in a study that will help us learn more about a new pertussis vaccine that we hope will offer greater protection from whooping cough.