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Showing results for "autism"

Research

Raine Study - Senses Special Interest Group

Chris Andrew Monique Sarra Videos Brennan-Jones Whitehouse Watch and listen to Andrew Robinson Jamieson PhD PhD PhD MPsych (Clin) MAPS BSc (Hons) MSc

Research

IDEA (Intellectual Disability Exploring Answers) Database

IDEA is one of the few population-based resources in the world dedicated to intellectual disability. The IDEA database contains information on all children born in Western Australia since 1983 who have been identified with having an intellectual disability. Individuals with autism spectrum disorder, both with and without intellectual disability, are also included in the database. Deidentified information is accessed from the Department of Communities WA, the WA Department of Education, and the National Disability Insurance Agency (NDIA) to create the database. IDEA can be linked to other datasets to facilitate research into the determinants, outcomes and service needs of children and adults with intellectual disability. Researchers can apply for such linked data, available in a de-identified format under approval from an ethics committee.

Research

Impact for DCD

Melissa Gail Matt Jenny Andrew Videos Licari Alvares Cooper Downs Whitehouse Watch and listen to Andrew PhD PhD BCA Marketing, BSc Statistics and

News & Events

The Kids researchers named as finalists in 2023 Premier’s Science Awards

Five The Kids Research Institute Australia researchers working across diverse and highly impactful areas of child health research have been named as finalists for the 2023 Premier’s Science Awards.

Frequently asked questions

FAQ about CliniKids, The Kids' clinical service for children with autism and/or developmental delays, and their families.

Research

Conceptualizing a quality of life framework for girls with Rett syndrome using qualitative methods

Existing quality of life scales for children in the general population or with other disabilities did not capture the QOL of children with Rett syndrome

News & Events

The Kids welcomes support for autistic students

The Kids Research Institute Australia has welcomed the recommendations to come out of the State Government’s inquiry into support for autistic children and young people in schools, released last week.

Research

Family satisfaction following spinal fusion in Rett syndrome

Families participating in the population-based and longitudinal Australian Rett Syndrome Database whose daughter had undergone spinal fusion provided data on...

Research

Negative impact of insomnia and daytime sleepiness on quality of life in individuals with the cyclin-dependent kinase-like 5 deficiency disorder

Cyclin-dependent kinase-like 5 (CDKL5) gene pathogenic variants result in CDKL5 deficiency disorder (CDD). Early onset intractable epilepsy and severe developmental delays are prominent symptoms of CDD. Comorbid sleep disturbances are a major concerning symptom for families.

Research

Initial Validation and Reliability of the CDKL5 Deficiency Disorder Hand Function Scale (CDD-Hand)

Pathogenic variants in the CDKL5 gene result in CDKL5 deficiency disorder (CDD), which is characterized by early-onset epilepsy, severe developmental delay, and often, cortical visual impairment. Validated clinical outcome measures are needed for future clinical trials to be successful. This study aimed to adapt the Rett Syndrome Hand Function Scale for CDKL5 deficiency disorder and evaluate its feasibility, acceptability, content validity, and reliability.