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  • 2020
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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)

What effect does regular exercise have on oxidative stress in people with Down syndrome? A systematic review with meta-analyses

Shields, N., Downs, J., de Haan, J. B., Taylor, N. F., Torr, J., Fernhall, B., Kingsley, M., Mnatzaganian, G. & Leonard, H., 1 Jun 2018, In : Journal of Science and Medicine in Sport. 21, 6, p. 596-603 8 p.

Research output: Contribution to journalReview article

1 Citation (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

23 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)
Open Access
5 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)
196 Downloads (Pure)

Vagus nerve stimulation for the treatment of refractory epilepsy in the CDKL5 Deficiency Disorder

Lim, Z., Wong, K., Downs, J., Bebbington, K., Demarest, S. & Leonard, H., 1 Oct 2018, In : Epilepsy Research. 146, p. 36-40 5 p.

Research output: Contribution to journalArticle

7 Citations (Scopus)
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)

Use of health services in the last year of life and cause of death in people with intellectual disability: A retrospective matched cohort study

Brameld, K., Spilsbury, K., Rosenwax, L., Leonard, H. & Semmens, J., 1 Feb 2018, In : BMJ Open. 8, 2, e020268.

Research output: Contribution to journalArticle

Open Access
6 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

20 Citations (Scopus)
6 Citations (Scopus)

The prevalence of mental health disorders and symptoms in children and adolescents with cerebral palsy: a systematic review and meta-analysis

Downs, J., Blackmore, A. M., Epstein, A., Skoss, R., Langdon, K., Jacoby, P., Whitehouse, A. J. O., Leonard, H., Rowe, P. W., Glasson, E. J. & The Cerebral Palsy Mental Health Group, 1 Jan 2018, In : Developmental Medicine and Child Neurology. 60, 1, p. 30-38 9 p.

Research output: Contribution to journalReview article

22 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)
253 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

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

11 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

Sleep disturbances in Rett syndrome: Impact and management including use of sleep hygiene practices

Boban, S., Leonard, H., Wong, K., Wilson, A. & Downs, J., 1 Jul 2018, In : American Journal of Medical Genetics, Part A. 176, 7, p. 1569-1577 9 p.

Research output: Contribution to journalArticle

2 Citations (Scopus)

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

2 Citations (Scopus)

Risk of stillbirth, preterm delivery, and fetal growth restriction following exposure in a previous birth: systematic review and meta-analysis

Malacova, E., Regan, A., Nassar, N., Raynes-Greenow, C., Leonard, H., Srinivasjois, R., W Shand, A., Lavin, T. & Pereira, G., 1 Jan 2018, In : BJOG: an International Journal of Obstetrics and Gynaecology. 125, 2, p. 183-192 10 p.

Research output: Contribution to journalArticle

25 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
2 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)

Respiratory morbidity in Rett syndrome: an observational study

MacKay, J., Leonard, H., Wong, K., Wilson, A. & Downs, J., 1 Sep 2018, In : Developmental Medicine and Child Neurology. 60, 9, p. 951-957 7 p.

Research output: Contribution to journalArticle

5 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

14 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., 19 Nov 2019, (Accepted/In press) In : Disability and Health Journal. 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
44 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

4 Citations (Scopus)

Parent-reported health-related quality of life of children with Down syndrome: A descriptive study

Shields, N., Leonard, H., Munteanu, S., Bourke, J., Lim, P., Taylor, N. F. & Downs, J., Apr 2018, In : Developmental Medicine and Child Neurology. 60, 4, p. 402-408

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)
221 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

17 Citations (Scopus)

Oral health experiences of individuals with Rett syndrome: A retrospective study

Lai, Y. Y. L., Wong, K., King, N. M., Downs, J. & Leonard, H., 29 Nov 2018, In : BMC Oral Health. 18, 1, 195.

Research output: Contribution to journalArticle

Open Access

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)