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CDKL5 deficiency disorder (CDD) is a rare developmental and epileptic encephalopathy. Greater understanding of the smallest meaningful improvements for individuals with CDD in clinical trials and practice is needed for a person-centred approach to treatment efficacy. This study explored how parent/caregivers of people with CDD understood meaningful improvements and described change for priority functional domains including communication, gross motor, fine motor, feeding.
CDKL5 deficiency disorder is a rare and severe developmental and epileptic encephalopathy that has profound effects on communication. It is essential that communication be measured accurately for upcoming gene therapy trials. The Communication Inventory Disability-Observer Reported was developed from a framework of communication derived from parent/caregiver interview data in consultation with disability and communication experts, and after reviewing concepts in existing measures.
Leadership in paediatric anaesthesia is undergoing rapid transformation as clinical complexity, workforce expectations, and organizational structures evolve. This review synthesizes recent developments and highlights the competencies required for effective leadership in this high-stakes specialty.
To better characterise prematurity-associated lung disease, adult spirometry phenotype classifications (obstructive lung disease, preserved ratio impaired spirometry and dysanapsis) have been applied to children born preterm. It is unknown how these phenotypes track over time.
In a sunny country such as Australia, it’s important to identify how to achieve the right amount of sun exposure for good health. We need to be able to harness the benefits of vitamin D and sunlight while remaining protected from the proven dangers of too much UV radiation.
Trans and gender diverse (trans) young people experience higher rates of physical and mental ill-health due to chronic exposure to gender minority stress. Consequently, trans young people report higher health and mental healthcare service utilisation. Disconcertingly, negative experiences of healthcare services are prevalent among trans young people, especially those with additional marginalised identities and backgrounds who experience multiple forms of marginalisation.
Young people must be central to health response design to ensure they are relevant and effective. It requires a clearer understanding of the opportunities and expectations surrounding youth engagement. Therefore, this study aims to gain a deeper understanding of the health priorities of young adults residing in South Australia and their engagement in the design of health programmes.
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First Nations women in Australia continue to experience disproportionately adverse maternal and infant outcomes. The ongoing legacy of colonisation and systemic racism shapes these outcomes. In the Australian Capital Territory (ACT), maternity services remain dominated by Western biomedical approaches that fail to deliver culturally safe and anti-racist care despite national standards that mandate such practices.
In close partnership with Aboriginal Elders and community members in Western Australia's south-west, we created ‘Kaal Tackles Eczema’, a children’s book to help Aboriginal families manage eczema. Our research showed a high prevalence and need for culturally relevant resources. The book uses Noongar language and art to educate and reduce infections, and is available online and in schools.