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Conceptualizing a quality of life framework for girls with Rett syndrome using qualitative methods

We interviewed 21 families with a daughter with Rett Syndrome about aspects of their daughters' lives that were satisfying or challenging to them.

Longitudinal bone mineral content and density in Rett syndrome and their contributing factors

This study measured changes in bone density over time using dual energy x-ray absorptiometry (DEXA). Lean tissue or muscle mass (LTM) was also measured.

Using a large international sample to investigate epilepsy in Rett syndrome

Using a large sample size, we investigated the relationships between epilepsy and genotype, and the impact of medications used on seizure management.

Seizures in Rett syndrome: an overview from a one-year calendar study

We collected information on a monthly basis on the patterns of seizures and medications of 162 girls in the Australian Rett Syndrome study over a calendar year.

Publications

Publications from 2016 dating back to 1993 of AussieRett researchers, showing the research work into Rett syndrome and related disorders.

Survey results

Download the Young Minds Matter report and overview, watch video snapshots and access survey results and tables.

Perceived need for services

Parents and carers were asked about the quality of services, need for services and whether their children received the needed service, as well as barriers.

Comparison with 1998

A comparison between the first and second national surveys of youth mental health

Wesfarmers Centre of Vaccines & Infectious Diseases

The Wesfarmers Centre of Vaccines & Infectious Diseases brings together a number of independent researchers and research teams with a common aim; to find and deliver new and improved solutions to prevent and treat serious infections experienced by children or adolescents.