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  • 2020
  • 2019
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  • 2016

Author

  • Helen Leonard

Young people with intellectual disability transitioning to adulthood: Do behaviour trajectories differ in those with and without down syndrome?

Foley, K. R., Taffe, J., Bourke, J., Einfeld, S. L., Tonge, B. J., Trollor, J. & Leonard, H., 8 Jul 2016, In : PLoS One. 11, 7, p. 1-14

Research output: Contribution to journalArticle

Open Access
8 Citations (Scopus)

ViPAR: A software platform for the Virtual Pooling and Analysis of Research Data

Carter, K. W., Francis, R., Bresnahan, M., Gissler, M., Grønborg, T. K., Gross, R., Gunnes, N., Hammond, G., Hornig, M., Hultman, C. M., Huttunen, J., Langridge, A., Leonard, H., Newman, S., Parner, E. T., Petersson, G., Reichenberg, A., Sandin, S., Schendel, D. E., Schalkwyk, L. & 8 others, Sourander, A., Steadman, C., Stoltenberg, C., Suominen, A., Surén, P., Susser, E., Sylvester Vethanayagam, A. & Yusof, Z., 2016, In : International Journal of Epidemiology. 45, 2, p. 408-416 9 p.

Research output: Contribution to journalArticle

24 Citations (Scopus)

Very Early Identification and Intervention for Infants at Risk of Neurodevelopmental Disorders: A Transdiagnostic Approach

Finlay-Jones, A., Varcin, K., Leonard, H., Bosco, A., Alvares, G. & Downs, J., 4 Jun 2019, In : Child Development Perspectives. 13, 2, p. 97-103 7 p.

Research output: Contribution to journalArticle

3 Citations (Scopus)

Validating the rett syndrome gross motor scale

Downs, J., Stahlhut, M., Wong, K., Syhler, B., Bisgaard, A. M., Jacoby, P. & Leonard, H., 22 Jan 2016, In : PLoS One. 11, 1, p. 1-11 e0147555.

Research output: Contribution to journalArticle

Open Access
File
23 Citations (Scopus)
201 Downloads (Pure)
1 Citation (Scopus)

Use of the ketogenic diet to manage refractory epilepsy in CDKL5 disorder: Experience of > 100 patients

Lim, Z., Wong, K., Olson, H. E., Bergin, A. M., Downs, J. & Leonard, H., Aug 2017, In : Epilepsia. 58, 8, p. 1415-1422 8 p.

Research output: Contribution to journalArticle

15 Citations (Scopus)

Twenty-five year survival of children with intellectual disability in Western Australia

Bourke, J., Nembhard, W. N., Wong, K. & Leonard, H., 1 Sep 2017, In : Journal of Pediatrics. 188, p. 232-239.e2

Research output: Contribution to journalArticle

6 Citations (Scopus)

Twenty-five–year survival for aboriginal and caucasian children with congenital heart defects in Western Australia, 1980 to 2010

Nembhard, W. N., Bourke, J., Leonard, H., Eckersley, L., Li, J. & Bower, C., 1 Dec 2016, In : Birth Defects Research Part A - Clinical and Molecular Teratology. 106, 12, p. 1016-1031 16 p.

Research output: Contribution to journalArticle

1 Citation (Scopus)

Transition to adulthood for young people with intellectual disability: the experiences of their families

Leonard, H., Foley, K. R., Pikora, T., Bourke, J., Wong, K., McPherson, L., Lennox, N. & Downs, J., 1 Dec 2016, In : European Child and Adolescent Psychiatry. 25, 12, p. 1369-1381 13 p.

Research output: Contribution to journalArticle

21 Citations (Scopus)

The prevalence and phenotypic signatures of mental ill health for children and adolescents with a neurogenetic disorder associated with intellectual disability: a systematic review

Glasson, E., Buckley, N., Chen, W., Leonard, H., Epstein, A., Skoss, R., Jacoby, P., Blackmore, A. M., Bourke, J. & Downs, J., 2020, (Accepted/In press) In : Journal of the American Academy of Child & Adolescent Psychiatry.

Research output: Contribution to journalReview article

The natural history of scoliosis in females with rett syndrome

Downs, J., Torode, I., Wong, K., Ellaway, C., Elliott, E. J., Christodoulou, J., Jacoby, P., Thomson, M. R., Izatt, M. T., Askin, G. N., Mcphee, B. I., Bridge, C., Cundy, P. & Leonard, H., 15 May 2016, In : Spine. 41, 10, p. 856-863

Research output: Contribution to journalArticle

Open Access
File
21 Citations (Scopus)
265 Downloads (Pure)

The incidence, prevalence and clinical features of MECP2 duplication syndrome in Australian children

Giudice-Nairn, P., Downs, J., Wong, K., Wilson, D., Ta, D., Gattas, M., Amor, D., Thompson, E., Kirrali-Borri, C., Ellaway, C. & Leonard, H., 12 Feb 2019, In : Journal of Paediatrics and Child Health.

Research output: Contribution to journalArticle

2 Citations (Scopus)

The contributions of fetal growth restriction and gestational age to developmental outcomes at 12 months of age: A cohort study

Baumgartel, K., Jensen, L., White, S. W., Wong, K., Straker, L., Leonard, H., Finlay-Jones, A. & Downs, J., Mar 2020, In : Early Human Development. 142, 104951.

Research output: Contribution to journalArticle

The Brain Basis of Comorbidity in Neurodevelopmental Disorders

Licari, M. K., Finlay-Jones, A., Reynolds, J. E., Alvares, G. A., Spittle, A. J., Downs, J., Whitehouse, A. J. O., Leonard, H., Evans, K. L. & Varcin, K., Mar 2019, In : Current Developmental Disorders Reports. 6, 1, p. 9-18 10 p.

Research output: Contribution to journalReview article

Survival of children and adolescents with intellectual disability following gastrostomy insertion

Wong, K., Glasson, E. J., Jacoby, P., Srasuebkul, P., Forbes, D., Ravikumara, M., Wilson, A., Bourke, J., Trollor, J., Leonard, H., Nagarajan, L. & Downs, J., 1 Jul 2020, In : Journal of Intellectual Disability Research. 64, 7, p. 497-511 15 p.

Research output: Contribution to journalArticle

Surgical fusion of early onset severe scoliosis increases survival in Rett syndrome: A cohort study

Downs, J., Torode, I., Wong, K., Ellaway, C., Elliott, E. J., Izatt, M. T., Askin, G. N., Mcphee, B. I., Cundy, P., Leonard, H., Jacoby, P., Thomson, M. R., Bridge, C. & Christodoulou, J., 2016, In : Developmental Medicine and Child Neurology. 58, 6, p. 632-638

Research output: Contribution to journalArticle

12 Citations (Scopus)

Stillbirth risk prediction using machine learning for a large cohort of births from Western Australia, 1980–2015

Malacova, E., Tippaya, S., Bailey, H. D., Chai, K., Farrant, B. M., Gebremedhin, A. T., Leonard, H., Marinovich, M. L., Nassar, N., Phatak, A., Raynes-Greenow, C., Regan, A. K., Shand, A. W., Shepherd, C. C. J., Srinivasjois, R., Tessema, G. A. & Pereira, G., 1 Dec 2020, In : Scientific Reports. 10, 1, 5354.

Research output: Contribution to journalArticle

Open Access

Severity Assessment in CDKL5 Deficiency Disorder

Demarest, S., Pestana-Knight, E. M., Olson, H. E., Downs, J., Marsh, E. D., Kaufmann, W. E., Partridge, C. A., Leonard, H., Gwadry-Sridhar, F., Frame, K. E., Cross, J. H., Chin, R. F. M., Parikh, S., Panzer, A., Weisenberg, J., Utley, K., Jaksha, A., Amin, S., Khwaja, O., Devinsky, O. & 3 others, Neul, J. L., Percy, A. K. & Benke, T. A., 1 Aug 2019, In : Pediatric Neurology. 97, p. 38-42 5 p.

Research output: Contribution to journalArticle

Open Access
2 Citations (Scopus)

Risk of Mortality into Adulthood According to Gestational Age at Birth

Srinivasjois, R., Nembhard, W., Wong, K., Bourke, J., Pereira, G. & Leonard, H., 1 Nov 2017, In : Journal of Pediatrics. 190, p. 185-191.e1

Research output: Contribution to journalArticle

7 Citations (Scopus)

Risk of Hospitalizations Following Gastrostomy in Children with Intellectual Disability

Jacoby, P., Wong, K., Srasuebkul, P., Glasson, E. J., Forbes, D., Ravikumara, M., Wilson, A., Nagarajan, L., Bourke, J., Trollor, J., Leonard, H. & Downs, J., Feb 2020, In : Journal of Pediatrics. 217, p. 131-138.e10

Research output: Contribution to journalArticle

Open Access
3 Citations (Scopus)

Risk of Developmental Disorders in Children of Immigrant Mothers: A Population-Based Data Linkage Evaluation

Abdullahi, I., Wong, K., Mutch, R., Glasson, E. J., de Klerk, N., Cherian, S., Downs, J. & Leonard, H., Jan 2019, In : The Journal of Pediatrics. 204, p. 275-284.e3

Research output: Contribution to journalArticle

3 Citations (Scopus)

Requirements for improving health and well-being of children with Prader-Willi syndrome and their families

Mackay, J., McCallum, Z., Ambler, G. R., Vora, K., Nixon, G., Bergman, P., Shields, N., Milner, K., Kapur, N., Crock, P., Caudri, D., Curran, J., Verge, C., Seton, C., Tai, A., Tham, E., Musthaffa, Y., Lafferty, A. R., Blecher, G., Harper, J. & 6 others, Schofield, C., Nielsen, A., Wilson, A., Leonard, H., Choong, C. S. & Downs, J., 30 Jun 2019, In : Journal of Paediatrics and Child Health.

Research output: Contribution to journalReview article

Open Access
1 Citation (Scopus)

Regan et al. Reply to "Sibling Comparison Design in Birth-Spacing Studies"

Regan, A. K., Ball, S. J., Warren, J. L., Malacova, E., Marston, C., Nassar, N., Leonard, H., de Klerk, N. & Pereira, G., Jan 2019, In : American Journal of Epidemiology. 188, 1, p. 22-23 2 p.

Research output: Contribution to journalEditorial

Open Access
10 Citations (Scopus)

Quantification of walking-based physical activity and sedentary time in individuals with Rett syndrome

Downs, J., Leonard, H., Wong, K., Newton, N. & Hill, K., 6 Jun 2017, In : Developmental Medicine and Child Neurology. 59, 6, p. 605-611

Research output: Contribution to journalArticle

15 Citations (Scopus)

Qualitative analysis of parental observations on quality of life in Australian children with Down syndrome

Murphy, N., Epstein, A., Leonard, H., Davis, E., Reddihough, D., Whitehouse, A., Jacoby, P., Bourke, J., Williams, K. & Downs, J., Feb 2017, In : Journal of Developmental and Behavioral Pediatrics. 38, 2, p. 161-168 8 p.

Research output: Contribution to journalArticle

12 Citations (Scopus)

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

Downs, J., Jacoby, P., Leonard, H., Epstein, A., Murphy, N., Davis, E., Reddihough, D., Whitehouse, A. & Williams, K., 15 Mar 2019, In : Quality of Life Research. 28, 3, p. 783-794 12 p.

Research output: Contribution to journalArticle

7 Citations (Scopus)

Prevalence estimates of mental health problems in children and adolescents with intellectual disability: A systematic review and meta-analysis

Buckley, N., Glasson, E. J., Chen, W., Epstein, A., Leonard, H., Skoss, R., Jacoby, P., Blackmore, A. M., Srinivasjois, R., Bourke, J., Sanders, R. J. & Downs, J., 30 May 2020, In : Australian and New Zealand Journal of Psychiatry.

Research output: Contribution to journalReview article

Prevalence and onset of comorbidities in the CDKL5 disorder differ from Rett syndrome

Mangatt, M., Wong, K., Anderson, B., Epstein, A., Hodgetts, S., Leonard, H. & Downs, J., 2016, In : Orphanet Journal of Rare Diseases. 11, 1, p. 39 39 p.

Research output: Contribution to journalArticle

32 Citations (Scopus)

Pregnancy and birth outcomes of mothers with intellectual disability and their infants: Advocacy needed to improve well-being

Fairthorne, J., Bourke, J., O'Donnell, M., Wong, K., de Klerk, N., Llewellyn, G. & Leonard, H., Apr 2020, In : Disability and Health Journal. 13, 2, 100871.

Research output: Contribution to journalArticle

Predicting Long-Term Survival Without Major Disability for Infants Born Preterm

Bourke, J., Wong, K., Srinivasjois, R., Pereira, G., Shepherd, C. C. J., White, S. W., Stanley, F. & Leonard, H., Dec 2019, In : The Journal of Pediatrics. 215, p. 90-97.e1

Research output: Contribution to journalArticle

Population-based prevalence of intellectual disability and autism spectrum disorders in Western Australia

Bourke, J., De Klerk, N., Smith, T. & Leonard, H., May 2016, In : Medicine (United States). 95, 21, p. e3737

Research output: Contribution to journalArticle

Open Access
45 Citations (Scopus)

Patterns of sedentary time and ambulatory physical activity in a Danish population of girls and women with Rett syndrome

Stahlhut, M., Downs, J., Aadahl, M., Leonard, H., Bisgaard, A. M. & Nordmark, E., 2 Oct 2017, In : Disability and Rehabilitation. p. 1-9 9 p.

Research output: Contribution to journalArticle

3 Citations (Scopus)

Parent-observed thematic data on quality of life in children with autism spectrum disorder

Epstein, A., Whitehouse, A., Williams, K., Murphy, N., Leonard, H., Davis, E., Reddihough, D. & Downs, J., 26 Oct 2017, In : Autism.

Research output: Contribution to journalArticle

Open Access
File
6 Citations (Scopus)
223 Downloads (Pure)

Parental perspectives on the communication abilities of their daughters with Rett syndrome

Urbanowicz, A., Leonard, H., Girdler, S., Ciccone, N. & Downs, J., Jan 2016, In : Developmental Neurorehabilitation. 19, 1, p. 17-25 9 p.

Research output: Contribution to journalArticle

18 Citations (Scopus)

Onset of maternal psychiatric disorders after the birth of a child with autism spectrum disorder: A retrospective cohort study

Fairthorne, J., Jacoby, P., Bourke, J., De Klerk, N. & Leonard, H., 2016, In : Autism. 20, 1, p. 37-44

Research output: Contribution to journalArticle

7 Citations (Scopus)
2 Citations (Scopus)

Measurement of sedentary behaviors or "downtime" in Rett Syndrome

Stahlhut, M., Hill, K., Bisgaard, A. M., Jensen, A. K., Andersen, M., Leonard, H. & Downs, J., 1 Oct 2017, In : Journal of Child Neurology. 32, 12, p. 1009-1013 5 p.

Research output: Contribution to journalArticle

4 Citations (Scopus)

Maternal psychiatric disorder and the risk of Autism Spectrum Disorder or intellectual disability in subsequent offspring

Fairthorne, J., Hammond, G., Bourke, J., De Klerk, N. & Leonard, H., 1 Feb 2016, In : Journal of Autism and Developmental Disorders. 46, 2, p. 523-533 12 p.

Research output: Contribution to journalArticle

6 Citations (Scopus)

Maltreatment risk among children with disabilities

Maclean, M. J., Sims, S., Bower, C., Leonard, H., Stanley, F. J. & O'Donnell, M., 1 Apr 2017, In : Pediatrics. 139, 4, e20161817.

Research output: Contribution to journalArticle

Open Access
File
32 Citations (Scopus)
322 Downloads (Pure)
1 Citation (Scopus)

Improved survival in Down Syndrome over the last 60 years and the impact of perinatal factors in recent decades

Glasson, E., Jacques, A., Wong, K., Bourke, J. & Leonard, H., Feb 2016, In : Journal of Pediatrics. 169, p. 214-220e1 8 p.

Research output: Contribution to journalArticle

Open Access
File
28 Citations (Scopus)
376 Downloads (Pure)

Impacts of caring for a child with the CDKL5 disorder on parental wellbeing and family quality of life

Mori, Y., Downs, J., Wong, K., Anderson, B., Epstein, A. & Leonard, H., 19 Jan 2017, In : Orphanet Journal of Rare Diseases. 12, 1, 16.

Research output: Contribution to journalArticle

Open Access
14 Citations (Scopus)
Open Access
File
1 Citation (Scopus)
239 Downloads (Pure)
1 Citation (Scopus)

Health care utilization and costs for children and adults with duchenne muscular dystrophy

Teoh, L., Geelhoed, E., Bayley, K., Leonard, H. & Laing, N., Jun 2016, In : Muscle and Nerve. 53, 6, p. 877-884

Research output: Contribution to journalArticle

5 Citations (Scopus)

Gastrostomy and quality of life in children with intellectual disability: A qualitative study

Glasson, E. J., Forbes, D., Ravikumara, M., Nagarajan, L., Wilson, A., Jacoby, P., Wong, K., Leonard, H. & Downs, J., 8 Apr 2020, In : Archives of Disease in Childhood.

Research output: Contribution to journalArticle

Functional abilities in children and adults with the CDKL5 disorder

Fehr, S., Downs, J., Ho, G., de Klerk, N., Forbes, D., Christodoulou, J., Williams, S. & Leonard, H., Nov 2016, In : American Journal of Medical Genetics, Part A. 170, 11, p. 2860-2869

Research output: Contribution to journalArticle

17 Citations (Scopus)

Feasibility of assessing diet with a mobile food record for adolescents and young adults with Down syndrome

Bathgate, K. E., Sherriff, J. L., Leonard, H., Dhaliwal, S. S., Delp, E. J., Boushey, C. J. & Kerr, D. A., 13 Mar 2017, In : Nutrients. 9, 3, 273.

Research output: Contribution to journalArticle

Open Access
5 Citations (Scopus)

Family satisfaction following spinal fusion in Rett syndrome

Downs, J., Torode, I., Ellaway, C., Jacoby, P., Bunting, C., Wong, K., Christodoulou, J. & Leonard, H., Jan 2016, In : Developmental Neurorehabilitation. 19, 1, p. 31-37 7 p.

Research output: Contribution to journalArticle

6 Citations (Scopus)