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Our study investigated the impacts of spinal fusion on survival and the risk of developing respiratory infections in females with Rett syndrome.

The Sibling Project focuses on children, adolescents and emerging adults who have a sibling with a disability, investigating their mental health, relationships and quality of life.

Following on from the CHARGE Australasia 2024 Conference, we would like to invite: Siblings aged 18+ who have a brother or sister with CHARGE

Research

Rett syndrome (RTT) is a rare neurodevelopmental disorder mainly affecting females and is caused by a mutation in the MECP2 gene. Recent research identified the domains of quality of life (QOL) important for children with RTT but there has been no investigation of domains important for adults. This qualitative study explored QOL in adults with RTT and compared domains with those previously identified for children.

Research

The U-PART intervention was found to be feasible and effective in the short term in girls and women with Rett Syndrome

Research

Through evidence review and the consensus of an expert panel, we developed recommendations for the clinical management of gastroesophageal reflux disease,...

Research

This paper aimed to describe the relationships between level of impairment and participation in community activities for girls and women with Rett syndrome.

Research

This study aimed to describe overall survival and adult health in those with Rett syndrome.

Research

This study investigated the capacity of three accelerometer-type devices to measure walking activity in Rett syndrome