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Guidelines for management of scoliosis in Rett syndrome patients based on expert consensus and clinical evidenceTo develop guidelines for the clinical management of scoliosis in Rett syndrome through evidence review and consensus expert panel opinion.
Research
Parental experiences of scoliosis management in Rett syndromeScoliosis is the most common orthopaedic complication of Rett syndrome. Parents of affected individuals are vital partners in the clinical management...
Research
Sleep problems in Rett syndromeSleep problems are thought to occur commonly in Rett syndrome, but there has been little research on prevalence or natural history.
Research
Delineation of large deletions of the MECP2 gene in Rett syndrome patients, including a familial case with a male probandComprehensive genetic screening programs have led to the identification of pathogenic methyl-CpG-binding protein 2 (MECP2) mutations...
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The association between behaviour and genotype in Rett Syndrome using the Australian Rett Syndrome DatabaseThis study compared the behavior profile of cases in the Australian Rett Syndrome Database (ARSD) with those in a British study using the Rett Syndrome...
While individual diseases are rare, as a group, rare diseases are common. Recent estimates suggest that between 3% and 6% of the world’s population are affected by rare disease.
News & Events
Thinking big to tackle kids’ brain developmentIf there’s one thing modern researchers and health professionals now understand, it’s that for so many diseases and conditions affecting children and adolescents, early intervention is crucial.
News & Events
The Kids Research Institute Australia researchers finalists for 2016 Eureka PrizesThree Perth researchers from The Kids Research Institute Australia have today been named finalists for the 2016 Australian Museum Eureka Prizes.
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New Rheumatic Heart Disease CentreThe Kids Research Institute Australia is proud to announce the launch of a world class Centre of Research Excellence in rheumatic heart disease (RHD).
News & Events
Deborah Lehmann Research Award OpportunityThe Deborah Lehmann Research Award in Paediatric Infectious Disease Research is a funding mechanism to support the training and development of early- to mid-career researchers (EMCR) or Higher Degree by Research (HDR) students who are nationals from the Pacific Region working in or outside their hom
Research
Time to tackle rheumatic heart disease: Data needed to drive global policy dialoguesThis report provides an update on the contemporary global and regional policy landscapes relevant to rheumatic heart disease
Research
Global, regional, & national burden of rheumatic heart disease, 1990-2015We estimated the global disease prevalence of and mortality due to rheumatic heart disease over a 25-year period
Research
Prevention of rheumatic fever and heart disease: Nepalese experienceHistorically, many young people suffered severe valvular disease and died awaiting heart valve replacement.
News & Events
Video: One brave little girl's battle with Rett syndromeImagine your baby is developing normally, then suddenly she starts losing skills. Watch Marlee's story below and find out what researchers are doing.
News & Events
International award for Rett syndrome researchA Perth medical researcher responsible for major advancements in the understanding of the neurological disorder Rett syndrome has had her efforts recognised
One of the many reasons for setting up the International CDKL5 Disorder Database was to learn more about this condition.