Reports and Findings
Research
International Rett syndrome study: InterRettHelen Jenny Leonard Downs MBChB MPH BApplSci (physio) MSc PhD Principal Research Fellow Head, Child Disability +61 419 956 946 08 6319 1763 helen.leonard@thekids.org.au Jenny.Downs@thekids.org.au Principal Research Fellow Head, Child Disability
Research
International CDKL5 Disorder DatabaseHelen Jenny Leonard Downs MBChB MPH BApplSci (physio) MSc PhD Principal Research Fellow Head, Child Disability +61 419 956 946 08 6319 1763 helen.leonard@thekids.org.au Jenny.Downs@thekids.org.au Principal Research Fellow Head, Child Disability
Research
Implementing Telehealth support to increase physical activity in girls and women with Rett syndromeHelen Jenny Leonard Downs MBChB MPH BApplSci (physio) MSc PhD Principal Research Fellow Head, Child Disability +61 419 956 946 08 6319 1763 helen.leonard@thekids.org.au Jenny.Downs@thekids.org.au Principal Research Fellow Head, Child Disability
Research
IDEA (Intellectual Disability Exploring Answers) DatabaseIDEA 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
Hospitalisation for oral health-related conditions in children with intellectual disability in Western Australia: a population-based cohort studyHelen Leonard MBChB MPH Principal Research Fellow +61 419 956 946 helen.leonard@thekids.org.au Principal Research Fellow Areas of research expertise: Child disability; intellectual disability; autism spectrum disorders; Down syndrome; Rett syndrome
Research
Establishing a national platform for the provision of evidence based practice in Prader-Willi syndromeHelen Jenny Leonard Downs MBChB MPH BApplSci (physio) MSc PhD Principal Research Fellow Head, Child Disability +61 419 956 946 08 6319 1763 helen.leonard@thekids.org.au Jenny.Downs@thekids.org.au Principal Research Fellow Head, Child Disability
Research
Epidemiology of craniofacial anomalies and association with intellectual disabilities in Western Australia: A population based studyHelen Mohammed Leonard Junaid MBChB MPH BDS, MDS, MFDS RCPS (Glasg.), DDPH RCS (Eng) Principal Research Fellow Honorary Team Member +61 419 956 946 +614 3387 0544 helen.leonard@thekids.org.au mohammed.junaid@thekids.org.au Principal Research Fellow
Research
Environmental enrichment intervention for Rett syndrome: an individually randomised stepped wedge trialHelen Jenny Leonard Downs MBChB MPH BApplSci (physio) MSc PhD Principal Research Fellow Head, Child Disability +61 419 956 946 08 6319 1763 helen.leonard@thekids.org.au Jenny.Downs@thekids.org.au Principal Research Fellow Head, Child Disability
Research
Down syndrome studies; the transition from secondary school to adulthood: Experiences and life outcomes for youth with an intellectual disability and their familiesHelen Jenny Keely Leonard Downs Bebbington MBChB MPH BApplSci (physio) MSc PhD MClinPsych/PhD Principal Research Fellow Head, Child Disability McCusker Postdoctoral Research Fellow in Type 1 Diabetes +61 419 956 946 08 6319 1763 08 6319 1766
Research
Down Syndrome Clinical Trial- BTD-001Helen Jenny Peter Leonard Downs Richmond MBChB MPH BApplSci (physio) MSc PhD MBBS MRCP(UK) FRACP Principal Research Fellow Head, Child Disability Head, Vaccine Trials Group +61 419 956 946 08 6319 1763 helen.leonard@thekids.org.au Jenny.Downs@