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Many girls and women with Rett syndrome experience seizures. We wanted to know if there were any factors that influenced the age when seizures first developed.

Research

The Sibling Project focuses on the wellbeing, relationships and needs of children, adolescents and emerging adults who have a sibling with a developmental disability.

Our vision is to increase awareness and improve outcomes for children with movement disorders and other neurodevelopmental conditions impacting on motor function.

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The first comprehensive analysis of the clinical effects of genetic mutations involved in Rett syndrome

We also wanted to find out whether any particular behaviours were associated with any specific mutation types.

We compared parent/carer-reported physical activities with the number of steps counted by an accelerometer in girls and women with Rett syndrome.

We wanted to find out whether mothers with a child with Rett syndrome who were more physically and mentally healthy had particular characteristics.

This study evaluated sixty-one families' satisfaction following spinal fusion in girls with Rett syndrome.

Research

This study describes the attainment of gross developmental milestones and regression, and assesses the relationships between genotype and age at diagnosis.