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Using directed-content analysis to identify a framework for understanding quality of life in adults with Rett syndrome

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.

Implementing telehealth support to increase physical activity in girls and women with Rett syndrome-ActivRett: protocol for a waitlist randomised controlled trial

Individuals with Rett syndrome (RTT) experience impaired gross motor skills, limiting their capacity to engage in physical activities and participation in activities. There is limited evidence of the effectiveness of supported physical activity interventions. This study aims to evaluate the effects of a telehealth-delivered physical activity programme on physical activity, sedentary behaviour and quality of life in RTT.

Assessing COVID-19 Across Western Australian Schools

Western Australia has been highly successful at containing community spread of COVID-19 to date.

App Offers Support and Ideas for Parents During the COVID-19 Crisis

Engaging activities to help families keep kids happy and healthy during social isolation are available in an Australian app underpinned by the latest child development science.

Corporate Philanthropy

How can your organisation help improve the lives of children?

How listening to our kids could help Australia get a move on

The Kids Research Institute Australia researchers are urging governments to listen more to what kids need.

Approaches to study the lifelong trajectories of children with neurodevelopmental conditions

We argue that population-based studies are critical to overcome the selection bias seen in many clinical samples and to identify true variability within a...

Umbilical Cord Blood Testosterone and Childhood Internalizing and Externalizing Behavior: A Prospective Study

Antenatal testosterone exposure influences fetal neurodevelopment and gender-role behavior in postnatal life and may contribute to differences in...

Setting the RECORD straight: Developing a guideline for the reporting of studies conducted using observational routinely collected data

There has been a dramatic increase in the availability of "routine data" for research purposes, including data from electronic medical records,...

Ethnic and gender differences in rates of congenital adrenal hyperplasia in Western Australia over a 21 year period

The aim was to evaluate the incidence, sex distribution, ethnicity, age at diagnosis, clinical presentation and morbidity of all childhood-onset congenital...