Browse study websites

Discover. Prevent. Cure.

Menu Fundraise Donate

    Recommended pages

      Do you mean

        1-10 of 200 results

        Refine search

        News & Events

        Research enriching the lives of girls with Rett syndrome

        A program developed by Telethon Kids Institute researcher Dr Jenny Downs has led to dramatic improvements in the functioning of Chinese children with Rett syndrome, and could change the world. ...

        News & Events

        Rett syndrome research reveals high fracture risk

        Girls and young women with Rett syndrome are nearly four times more likely to suffer a fracture. ...

        News & Events

        New study reveals Rett syndrome can strike males

        A new study has found that the genetic flaw responsible for Rett syndrome can strike males, even where there isn't a family history of the rare brain disorder. ...

        Sibling/Parent Research Advisor

        ...

        Research

        Rett Syndrome Behaviour Questionnaire in Children and Adults With Rett Syndrome: Psychometric Characterization and Revised Factor Structure

        Rett syndrome (RTT) is a severe neurodevelopmental disorder associated with multiple neurobehavioral abnormalities. The Rett Syndrome Behaviour Questionnaire (RSBQ) was developed for pediatric RTT observational studies. Because its application has expanded to adult and interventional studies, we evaluated the RSBQ's psychometric properties in six pediatric (n = 323) and five adult (n = 309) datasets. ...

        Research

        Longitudinal effects of caregiving on parental well-being: the example of Rett syndrome, a severe neurological disorder

        Our findings suggest that some opportunities do exist for clinicians to help optimise parental well-being ...

        Research

        Management of oral and dental problems in Rett syndrome: a narrative review of the literature

        Review of the available dental literature on assessment and management of the oral manifestations of Rett syndrome ...

        Research

        Oral health care and service utilisation in individuals with Rett syndrome: an international cross-sectional study

        There is a dearth of literature available on the comparative oral health status of those with Rett syndrome (RTT) despite diurnal bruxism being a supportive diagnostic criterion for the disorder. This study was designed to investigate the dental experiences of individuals with RTT in terms of perceived at-home and professional dental care. ...

        Research

        Parental perspectives on the communication abilities of their daughters with Rett syndrome

        This study describes, from the perspective of parents, how females with Rett syndrome communicate in everyday life and the barriers and facilitators to... ...

        Research

        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... ...

        Page 1 of 20