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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. ...

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Telethon Kids Institute and Alleasing sign agreement worth up to $12.0 million

Telethon Kids Institute has signed a three-year extendable strategic supply partnership with leading asset finance and leasing solutions provider Alleasing. ...

Research

Factors influencing participation in home, school, and community settings by children and adolescents with neuromuscular disorders: A qualitative descriptive study

This study explored how children and adolescents with a neuromuscular disorder (NMD) and their parents experienced barriers and enablers to the child's participation. ...

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Vertex grant to support research into treatment strategies for cystic fibrosis lung disease

Dr Daniel Laucirica, a research officer with the Wal-yan Respiratory Research Centre, will undertake new research into potential treatment strategies to prevent lung damage in people with cystic fibrosis (CF), under the mentorship of Associate Professor Anthony Kicic - made possible by a Vertex Cyst ...

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Study shows climate change will devastate children’s health without fast global action

Increased numbers of preterm births, higher incidence of respiratory disease and death, and more children in hospitals are some of the stark health outcomes the world is facing from the impacts of extreme climate change. ...

News & Events

Mental health champion a ‘brilliant woman’

Congratulations to Head of Youth Mental Health at Telethon Kids Institute, Dr Yael Perry, who has received a Telstra Health 2023 Brilliant Women in Digital Health Award in recognition of her innovative use of technology to achieve positive mental health outcomes for marginalised young people. ...

Research

Profiling the Longitudinal Development of Babbling in Infants with Cerebral Palsy: Validation of the Infant Monitor of Vocal Production (IMP) Using the Stark Assessment of Early Vocal Development-Revised (SAEVD-R)

We compared early vocal development in children "at risk" for cerebral palsy (CP) with typically developing (TD) infants aged 6 to 15 months using the SAEVD-R, investigating potential pre-linguistic markers of communication impairment. Additionally, we sought to examine the agreement between the SAEVD-R and IMP, which uses parent report, in identifying departure from typical vocal development in at-risk infants. ...

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

Telethon Kids Institute and Alleasing sign agreement worth up to $12.0 million

Factors influencing participation in home, school, and community settings by children and adolescents with neuromuscular disorders: A qualitative descriptive study

Vertex grant to support research into treatment strategies for cystic fibrosis lung disease

Study shows climate change will devastate children’s health without fast global action

Mental health champion a ‘brilliant woman’

Profiling the Longitudinal Development of Babbling in Infants with Cerebral Palsy: Validation of the Infant Monitor of Vocal Production (IMP) Using the Stark Assessment of Early Vocal Development-Revised (SAEVD-R)

SToP-ping skin sores in the Kimberley

Clinical and biological progress over 50 years in Rett syndrome

Every Friday: Child Health Research Seminars 2014