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The studies this project has conducted
The list of The Siblings Project publications
This study evaluated sixty-one families' satisfaction following spinal fusion in girls 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.
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.
Developmental and epileptic encephalopathy (DEE) conditions are rare, and most have a genetic cause.
Research
The CDKL5 disorder is an independent clinical entity associated with early-onset encephalopathyThe clinical understanding of the CDKL5 disorder remains limited, with most information being derived from small patient groups seen at individual centres.
Research
Prevalence, clinical investigation, and management of gallbladder disease in Rett syndromeThis study determined the prevalence of cholelithiasis and/or cholecystectomy in Rett syndrome, described gallbladder function in a clinical cohort, and...
Research
Use of equipment and respite services and caregiver health among Australian families living with Rett syndromeThis study assessed factors that could influence equipment and respite services use among Australian families caring for a girl/woman with Rett syndrome and...