Emma Helen Jenny Peter Glasson Leonard Downs Jacoby EJ HM JA PJ BPsych BSc (Hons) PhD MBChB MPH BApplSci (physio) MSc PhD BA (Hons) MSc Senior Research Fellow Principal Research Fellow Program Head, Development and Disability Biostatistician +61 ...

• 1. Telethon Kids Institute
• Projects

Building data linkage capabilities, and how linked databases can be used to identify persons with IDD and used for population-based research ...

• 1. Telethon Kids Institute
• Our research
• Reports and Findings
• 2019
• October 2019

Melissa Fiona Helen O'Donnell Stanley Leonard M FJ HM BPsych (Hons), MPsych, GradDip Ed, PhD FAA FASSA MSc MD FFPHM FAFPHM FRACP FRANZCOG HonDSc HonDUniv HonFRACGP HonMD HonFRCPCH HonLLB (honoris causa) MBChB MPH Honorary Research Associate Patron ...

• 1. Telethon Kids Institute
• Projects

Alanna Mary Tess Yasmin Sincovich Brushe Gregory Harman-Smith AS MB TG YHS BPsych(Hons), PhD BPsych(Hons), PhD (Public Health) BSc (Hons), PhD (Psychology) BA, BHlthSc(Hons), PhD Senior Research Officer Senior Research Officer Senior Research ...

• 1. Telethon Kids Institute
• Projects
• Past projects

Streptoccocal A (Strep A, GAS) infections in Australia are responsible for significant morbidity and mortality through both invasive (iGAS) and post-streptococcal (postGAS) diseases as well as preceding superficial (sGAS) skin and throat infection. The burden of iGAS and postGAS are addressed in some jurisdictions by mandatory notification systems; in contrast, the burden of preceding sGAS has no reporting structure, and is less well defined. ...

• 1. Telethon Kids Institute
• Our research
• Reports and Findings
• 2023
• November 2023

Yasmin Sandra Mary Alanna Harman-Smith Van Diermen Brushe Sincovich YHS SVD MB AS BA, BHlthSc(Hons), PhD BPsych(Hons), PhD (Public Health) BPsych(Hons), PhD Head, Early Years Systems Evidence; Head, Tenders Support Unit Community Engagement ...

• 1. Telethon Kids Institute
• Projects
• Past projects

CDKL5 Deficiency Disorder (CDD) is a rare genetic disorder with symptoms of epilepsy, developmental impairments, and other comorbidities. Currently, there are no outcome measures for CDD with comprehensive evidence of validation. This study aimed to evaluate the psychometric properties of the Quality of Life Inventory-Disability (QI-Disability) in CDD. Quality of Life Inventory-Disability was administered to 152 parent caregivers registered with the International CDKL5 Disorder Database (ICDD). ...

• 1. Telethon Kids Institute
• Our research
• Reports and Findings
• 2023
• January 2023

Satisfactory content validity is reported, where ongoing consumer feedback shaped the dataset from which the final items were selected ...

• 1. Telethon Kids Institute
• Our research
• Reports and Findings
• 2019
• October 2019

There was a significant improvement in the management of anaphylaxis after the introduction of intensified physician training programs ...

• 1. Telethon Kids Institute
• Our research
• Reports and Findings
• 2018
• September 2018

We conducted an investigation of all cases coded as anaphylaxis presenting to the main tertiary PED in Perth, Australia, where all coding is performed by staff. ...

• 1. Telethon Kids Institute
• Our research
• Reports and Findings
• 2017
• May 2017

Marianne Rebecca Stephanie John Jonathan Asha Mullane Pavlos Enkel Jacky Carapetis AM Bowen MM RP SE JJ JR AC BSc (OT) PhD, MSFS, BSc (Hons), MPH, MIPH AM MBBS FRACP FAFPHM PhD FAHMS BA MBBS DCH FRACP PhD GAICD Program Advisor, SToP Trial Senior ...

• 1. Telethon Kids Institute
• Projects

We hope that through earlier diagnosis and treatment of muscle weakness during sleep, we can prevent future lung failure in children with neuromuscular disorders. ...

• 1. Telethon Kids Institute
• Projects