Projects per year
Using the Short Form 12 Health Survey this cross-sectional study examined parental well-being in caregivers of children with one of three genetic disorders associated with intellectual disability; Down syndrome, Rett syndrome and the CDKL5 disorder. Data were sourced from the Western Australian Down Syndrome (n = 291), Australian Rett Syndrome (n = 187) and International CDKL5 Disorder (n = 168) Databases. Among 596 mothers (median age, years 43.7; 24.6–72.2), emotional well-being was poorer than general female populations across age groups. Multivariate linear regression identified the poorest well-being in parents of children with the CDKL5 disorder, a rare but severe and complex encephalopathy, and negative associations with increased clinical severity irrespective of diagnosis. These findings are important for those providing healthcare and social services for these populations.
Towards Evidence Based Care for Rett Syndrome - A Research Model to Inform Management of Rare Disorders
1/01/11 → 31/12/13
1/01/10 → 31/12/14
Genetic, Family and Social Determinants of the Burden and Outcome in Rett Syndrome: A Population-Based Investigation
1/01/04 → 31/12/08