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Family satisfaction following spinal fusion in Rett syndrome

We evaluated family satisfaction following spinal fusion in girls with Rett syndrome

Transforming Families

We want to better understand the relationship between parents/carers and their children who identify as trans or gender diverse with the aim of improving the well-being of the whole family.

Western Australian Child Development Atlas - Phase I

David Melissa Rebecca Ansell O'Donnell Glauert DipTeach BEd PGD H Science MPhil MPA BPsych (Hons), MPsych, GradDip Ed, PhD BPsych (Hons) PhD Honorary

The natural history of the MECP2 Duplication disorder: Australian surveillance and plans for development of an international register

Helen Jenny Leonard Downs MBChB MPH BApplSci (physio) MSc PhD Principal Research Fellow Head, Child Disability +61 419 956 946 08 6319 1763

Vaccine Impact Modelling Consortium (VIMC) supporting Gavi, the Vaccine Alliance

In this project, our team provides malaria vaccine impact predictions to inform vaccine investment strategies for Gavi, the Vaccine Alliance, and their partners.

Defining Group A Streptococcus interaction with the tonsil epithelium to inform vaccine development

A vaccine that prevents the initial attachment of Strep A to the tonsils would reduce the incidence of Strep throat and severe diseases that result.

Establishing a national platform for the provision of evidence based practice in Prader-Willi syndrome

Helen Jenny Leonard Downs MBChB MPH BApplSci (physio) MSc PhD Principal Research Fellow Head, Child Disability +61 419 956 946 08 6319 1763

Psychometric properties of QI-Disability in CDKL5 Deficiency Disorder: Establishing readiness for clinical trials

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).

Multi-site validation of a suite of clinical outcome measures for clinical trial readiness in the CDKL5 Deficiency Disorder

Helen Jenny Peter Leonard Downs Jacoby MBChB MPH BApplSci (physio) MSc PhD BA (Hons) MSc Principal Research Fellow Head, Child Disability

Piloting a self-compassion program to promote physical and psychological wellbeing in youth with T1D

Amy Keely Liz Megan Asha Finlay-Jones Bebbington Davis Ansell Parkinson BPsych(Hons), MPsych(Clinical), MHealthEcon, PhD (Clin Psych) MClinPsych/PhD