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Guide our sibling research!
Guide our sibling research!
We want to hear from siblings living outside of Australian cities!
Sibling Support and Teen Talk Studies form
The visual representation of Teen Talk study findings
Validated measures capable of demonstrating meaningful interventional change in the CDKL5 deficiency disorder (CDD) are lacking. The study objective was to modify the Rett Syndrome Gross Motor Scale (RSGMS) and evaluate its psychometric properties for individuals with CDD.
No validated oral health-related quality of life (OHRQOL) instrument currently exists for those with severe intellectual and developmental disabilities and who communicate non-verbally. This qualitative study aimed to explore the domains that were important to the oral health-related quality of life in individuals with Rett syndrome.
Siblings of children with intellectual disability have unique family experiences, varying by type of disability.