Helen Leonard

Biographic Data

ID1737740
NAMEHelen Leonard
GIVEN NAMESHelen
FAMILY NAMELeonard
SIGNATURELEONARD H
AFFILIATIONSThe Kids Research Institute Australia
ORCID0000-0001-6405-5834
VERIFIEDYes
TOTAL WORKS18
TOTAL CITATIONS16
WORKS AS AUTHOR18
WORKS AS EDITOR0
FIRST PUBLICATION YEAR2005
LATEST PUBLICATION YEAR2026
H-INDEX2

  • Sibling Perspectives of Family Life and Social Connection Among Adolescents From Families of Children With and Without Neurodevelopmental Conditions

    Open AccessCaitlin Gray, Emma J Glasson et al.ARTICLEYouth & Society2026

    This study explored adolescent siblings’ perspectives of family life and social connections, comparing the experiences of siblings of children with and without neurodevelopmental conditions. Using a mixed methods design, teenaged siblings aged 13 to 19 years in Australia, completed questionnaires and participated in focus groups to describe their experiences relating to friendships, recreation, and holidays. Forty teenagers participated, includin…

  • Using Population Data to Explore Sibling Profiles in Families of Children With and Without Neurodevelopmental Conditions

    Open AccessCaitlin Gray, Helen Leonard et al.ARTICLEFamilies in Society The Journal…2026

    Sibling profiles, including sibling status (only-child or sibling) and sibling characteristics (sibling size, birth order, and sex), can impact on lived experiences and social interactions, and operate as protective or risk factors for a wide range of health and well-being indicators and outcomes. Using population-based data linkage to disability-specific databases, sibling profiles were compared between families of children with and without neur…

  • Addressing the challenges of intellectual disability identification for health policy and research in Australia

    Open AccessHelen Leonard, H M Leonard et al.ARTICLEFrontiers in Psychiatry2026

    This article discusses the important issue of the need for a stable definition of intellectual disability in order to allow comparisons by place and over time such as in the monitoring of this population's health needs and utilization. The aim of the new Australian National Centre for Intellectual Disability Health, established in 2023, is to ensure that all Australian children and adults with intellectual disability receive high-quality healthca…

  • From QI-disability to QID-12

    Open AccessMelissa K Licari, Andrew J O Whitehouse et al.ARTICLEQuality of Life Research2026

    Quality of Life Disability (QI-Disability) is a 32-item parent-report measure assessing quality of life (QOL) in children with intellectual disability across domains of physical health, positive emotions, negative emotions, social interactions, leisure and outdoors, and independence. This study aimed to develop and validate a short form for use in clinical and research settings. Caregivers of 1,699 children with intellectual disability aged 3–18 …

  • Parent/caregiver perspectives of meaningful improvement in functional domains for people with CDKL5 deficiency disorder

    Open AccessJessica Keeley, Zoe Skoda et al.ARTICLEQuality of Life Research2025

    Meaningful improvement means different things to different people with some factors consistent regardless of ability level suggesting important underlying concepts for measurement requiring future investigation. These findings can contribute to the development of clinical treatments and trials that focus on factors that are important to people with CDD and their families

  • Intellectual disability and autism prevalence in Western Australia

    Open AccessJenny Bourke, Richard Sanders et al.ARTICLEFrontiers in Psychiatry2024

    The concurrent relaxation of ASD diagnostic practice standards in Western Australia associated with the administration of access to the NDIS and the release of the National Guidelines empowering single diagnosticians to determine the appropriateness of engaging additional diagnosticians to form a multidisciplinary team on ASD diagnosis, appear to be important factors associated with the increase in ASD diagnoses both with and without intellectual…

  • How Families Manage the Complex Medical Needs of Their Children with Mecp2 Duplication Syndrome

    Open AccessDani John Cherian, Daniel Ta et al.ARTICLEChildren2023

    MECP2 duplication syndrome (MDS) is a rare, X-linked, neurodevelopmental disorder resulting from the duplication of the methyl-CpG-binding protein 2 ( MECP2 ) gene. The clinical features of MDS include severe intellectual disability, global developmental delay, seizures, recurrent respiratory infections, and gastrointestinal problems. The aim of this qualitative study was to explore how the parents of children with MDS manage their child's seizur…

  • Medical Comorbidities in Mecp2 Duplication Syndrome

    Open AccessDaniel Ta, Jenny Downs et al.ARTICLEChildren2022

    Since the discovery of MECP2 duplication syndrome (MDS) in 1999, efforts to characterise this disorder have been limited by a lack of large datasets, with small case series often favouring the reporting of certain conditions over others. This study is the largest to date, featuring 134 males and 20 females, ascertained from the international MECP2 Duplication Database (MDBase). We report a higher frequency of pneumonia, bronchitis, bronchiolitis,…

  • Development of an International Database for a Rare Genetic Disorder

    Open AccessDaniel Ta, Jenny Downs et al.ARTICLEChildren2022

    The natural history of MECP2 duplication syndrome (MDS), a rare X-linked neurodevelopmental disorder with an estimated birth prevalence of 1/150,000 live births, is poorly understood due to a lack of clinical data collected for research. Such information is critical to the understanding of disease progression, therapeutic endpoints and outcome measures for clinical trials, as well as the development of therapies and orphan products. This clinical…

  • The effect of functioning on Quality of Life Inventory-Disability measured quality of life is not mediated or moderated by parental psychological distress

    Open AccessAndrew J O Whitehouse, Peter Jacoby et al.ARTICLEQuality of Life Research2021

  • Psychometric properties of the Quality of Life Inventory-Disability (QI-Disability) measure

    Open AccessJenny Downs, Peter Jacoby et al.ARTICLEQuality of Life Research2018

  • Maternal mental health and risk of child protection involvement

    Melissa O’donnell, Miriam J Maclean et al.ARTICLEJournal of Epidemiology and…2015Cited by: 9References: 16

    BACKGROUND: Previous research shows that maternal mental illness is an important risk factor for child maltreatment. This study aims to quantify the relationship between maternal mental health and risk of child maltreatment according to the different types of mental health diagnoses. METHODS: The study used a retrospective cohort of children born in Western Australia between 1990 and 2005, with deidentified linked data from routine health and chi…

  • To Feel Belonged

    Open AccessKitty‐Rose Foley, A M Blackmore et al.ARTICLEChild Indicators Research2012Cited by: 1References: 9

  • P2-542 Population level investigation of hospital dental admissions for children under 5 years with intellectual disability

    Linda Slack-Smith, Lyn Colvin et al.ARTICLEJournal of Epidemiology and…2011

    Introduction Population level detailed data describing hospital admissions for dental reasons in children with intellectual disability (ID) is lacking. This paper describes dental hospitalisations in children under five years of age identified with ID and compares with children without ID. Methods Data were extracted from population databases in Western Australia linking midwives' data collected on all births with population data regarding birth …

  • Rates and types of hospitalisations for children who have subsequent contact with the child protection system

    Melissa O’donnell, Natasha Nassar et al.ARTICLEJournal of Epidemiology and…2010Cited by: 1References: 11

    OBJECTIVES: To determine whether children who have child maltreatment allegation or substantiation have a higher rate of general hospital admissions and injury related admissions when compared to other children and to investigate other types of admissions, such as mental health, infections and admissions due to external causes. STUDY DESIGN: A prospective matched case-control study of children born in Western Australia between 1990 and 2005 using…

  • Idea (Intellectual Disability Exploring Answers)

    Open AccessBeverly Petterson, Helen Leonard et al.ARTICLEAnnals of Human Biology2005

    Despite the demands it places on individuals, families and the community, intellectual disability (ID) is a neglected area of public health. Accurate estimates of prevalence are sparse and range from 0.5 to 3.0%. The cause of the condition is unknown in at least 50% of cases. This paper describes the Intellectual Disability Exploring Answers (IDEA) database set up in Western Australia to provide an infrastructure for research and to facilitate th…

  • InterRett—The application of bioinformatics to International Rett syndrome research

    Open AccessH Moore, Hannah C Moore et al.ARTICLEAnnals of Human Biology2005

    InterRett, International Rett Syndrome Association (IRSA) Rett Phenotype Database, is a unique international project funded by the IRSA, which brings together child neurologists, geneticists, paediatricians, epidemiologists, researchers and families of affected children. The principal aim of InterRett is to increase the clinical understanding of Rett syndrome throughout the world and with the statistical power of large case numbers, determine any…

  • Association of sociodemographic characteristics of children with intellectual disability in Western Australia

    Open AccessHelen Leonard, Beverly Petterson et al.ARTICLESocial Science & Medicine2005Cited by: 5References: 31