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Assessment and management of nutrition and growth in Rett syndrome

We developed recommendations to assess and manage issues relating to poor growth and weight gain in Rett syndrome, including consideration of gastrostomy.

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.

News & Events

Wal-yan researchers to join global respiratory congress in Vienna

Researchers from the Wal-yan Respiratory Research Centre are proud to be part of this prestigious event, contributing their expertise to the Congress' outstanding scientific programme.

News & Events

World-first study finds some biodiesel exhausts harmful to children

Wal-yan Respiratory Research Centre PhD candidate Katherine Landwehr is researching the impact of breathing in biodiesel exhaust fumes on the lungs.

News & Events

Patients with antibiotic-resistant lung infections to receive promising phage therapy treatment as part of new trial led by The Kids Research Institute Australia Researcher Anthony Kicic

Patients with lung infections that are not responding to antibiotics will be treated with phage therapy as part of a translational trial program to be undertaken by world-recognised experts in this field.