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Author

  • Helen Leonard
2013

Improving health outcomes in Rett syndrome

Downs, J., Leonard, H., Croft, D., Ravikumara, M., Bathgate, K., Ellaway, C., Thompson, S., Percy, A. & Baikie, G., 2013, Nutritional and Digestive Health. Australia

Research output: Chapter in Book/Conference paperOther chapter contribution

Open Access
File
197 Downloads (Pure)
2017

Australian children living with rare diseases: experiences of diagnosis and perceived consequences of diagnostic delays

Zurynski, Y., Deverell, M., Dalkeith, T., Johnson, S., Christodoulou, J., Leonard, H. & Elliott, E. J., 11 Apr 2017, In : Orphanet Journal of Rare Diseases. 12, 1, 9 p., 68.

Research output: Contribution to journalArticle

Open Access
28 Citations (Scopus)

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)

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)
2016

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)

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)
2011

Altered attainment of developmental milestones influences the age of diagnosis of Rett syndrome

Fehr, S., Bebbington, A., Ellaway, C., Rowe, P., Leonard, H. & Downs, J., 2011, In : Journal of Child Neurology. 26, 8, p. 980-987

Research output: Contribution to journalArticle

28 Citations (Scopus)
2012

Young adults with intellectual disability transitioning from school to post-school: A literature review framed within the ICF

Foley, K-R., Dyke, P., Girdler, S., Bourke, J. & Leonard, H., 2012, In : Disability and Rehabilitation. 34, 20, p. 1747-1764

Research output: Contribution to journalArticle

45 Citations (Scopus)
2011

Bone mineral content and density in rett syndrome and their contributing factors

Jefferson, A. L., Woodhead, H. J., Fyfe, S., Briody, J., Bebbington, A., Strauss, B. J., Jacoby, P. & Leonard, H., 2011, In : Pediatric Research. 69, 4, p. 293-298

Research output: Contribution to journalArticle

26 Citations (Scopus)
2013

Resourceful and creative methods are necessary to research rare disorders

Leonard, H., Anderson, A., Bebbington, A., Bao, X., Wong, K., Williams, S. & Downs, J., 2013, In : Developmental Medicine and Child Neurology. Online, p. 1-2

Research output: Contribution to journalLetter

Open Access
2 Citations (Scopus)
2018

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)
2015

A validation study of a modified Bouchard activity record that extends the concept of 'uptime' to Rett syndrome

Lor, L., Hill, K., Jacoby, P., Leonard, H. & Downs, J., Dec 2015, In : Developmental Medicine and Child Neurology. 57, 12, p. 1137-1142

Research output: Contribution to journalArticle

Open Access
7 Citations (Scopus)
2016

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)
2018

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)
2014

Community participation for girls and women living with Rett syndrome

Andrews, J., Leonard, H., Hammond, G., Girdler, S., Rajapaksa, R., Bathgate, K. & Downs, J., Jun 2014, In : Disability and Rehabilitation. 36, 11, p. 894-899

Research output: Contribution to journalArticle

9 Citations (Scopus)
2012

It's not what you were expecting, but it's still a beautiful journey: The experience of mothers of children with Down syndrome

Pillay, D., Girdler, S., Collins, M. & Leonard, H., 2012, In : Disability and Rehabilitation. 34, 18, p. 1501-1510

Research output: Contribution to journalArticle

26 Citations (Scopus)
2017

Building the repertoire of measures of walking in Rett syndrome

Stahlhut, M., Downs, J., Leonard, H., Bisgaard, A. M. & Nordmark, E., 11 Sep 2017, In : Disability and Rehabilitation. 39, 19, p. 1926-1931 6 p.

Research output: Contribution to journalArticle

7 Citations (Scopus)
2020

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
2011

Leisure participation for school-aged children with Down syndrome

Oates, A., Bebbington, A., Bourke, J. & Leonard, H., 2011, In : Disability and Rehabilitation. 33, 19-20, p. 1880-1889

Research output: Contribution to journalArticle

41 Citations (Scopus)
2018

Intellectual disability in children conceived using assisted reproductive technology

Hansen, M., Greenop, K. R., Bourke, J., Baynam, G., Hart, R. J. & Leonard, H., 1 Dec 2018, In : Pediatrics. 142, 6, e20181269.

Research output: Contribution to journalArticle

3 Citations (Scopus)
2012

What does the nature of the MECP2 mutation tell us about parental origin and recurrence risk in Rett syndrome?

Zhang, J., Bao, X., Cao, G., Jiang, S., Zhu, X., Lu, H., Jia, L., Pan, H., Fehr, S., Davis, M., Leonard, H., Ravine, D. & Wu, X., 2012, In : Clinical Genetics. 82, 6, p. 526-533

Research output: Contribution to journalArticle

6 Citations (Scopus)
2013

Assessment and management of nutrition and growth in rett syndrome

Leonard, H., Ravikumara, M., Baikie, G., Naseem, N., Ellaway, C., Percy, A., Abraham, S., Geerts, S., Lane, J., Jones, M., Bathgate, K. & Downs, J., Oct 2013, In : Journal of Pediatric Gastroenterology and Nutrition. 57, 4, p. 451-460

Research output: Contribution to journalArticle

Open Access
29 Citations (Scopus)
2015

Patterns of depressive symptoms and social relating behaviors differ over time from other behavioral domains for young people with Down syndrome

Foley, K. R., Bourke, J., Einfeld, S. L., Tonge, B. J., Jacoby, P. & Leonard, H., 2015, In : Medicine. 94, 19, p. e710

Research output: Contribution to journalArticle

Open Access
9 Citations (Scopus)
2020

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)
2012

Dental admissions in children under two years – a total-population investigation

Slack-Smith, L., Colvin, L., Leonard, H., Kilpatrick, N., Read, A. & Messer, L. B., 2012, In : Child: Care, Health and Development. 39, 2, p. 253-259

Research output: Contribution to journalArticle

7 Citations (Scopus)
2015

Spinal fusion in girls with Rett syndrome: Post-operative recovery and family experiences

Marr, C., Leonard, H., Torode, I. & Downs, J., 26 Nov 2015, In : Child: Care, Health and Development. 41, 6, p. 1000-1009 10 p.

Research output: Contribution to journalArticle

10 Citations (Scopus)
2012

The phenotype associated with a large deletion on MECP2

Bebbington, A., Downs, J., Percy, A., Pineda, M., Zeev, B. B., Bahi-Buisson, N. & Leonard, H., 2012, In : European Journal of Human Genetics. 20, 9, p. 921-927

Research output: Contribution to journalArticle

19 Citations (Scopus)
2019

Birth seasonality and risk of autism spectrum disorder

Lee, B. K., Gross, R., Francis, R. W., Karlsson, H., Schendel, D. E., Sourander, A., Reichenberg, A., Parner, E. T., Hornig, M., Yaniv, A., Leonard, H. & Sandin, S., 15 Aug 2019, In : European Journal of Epidemiology. 34, 8, p. 785-792 8 p.

Research output: Contribution to journalArticle

Open Access
4 Citations (Scopus)
2014

Experience of gastrostomy using a quality care framework: The example of rett syndrome

Downs, J., Wong, K., Ravikumara, M., Ellaway, C., Elliott, E. J., Christodoulou, J., Jacoby, P. & Leonard, H., Dec 2014, In : Medicine (United States). 93, 28, p. e328

Research output: Contribution to journalArticle

Open Access
16 Citations (Scopus)
2011

Use of equipment and respite services and caregiver health among Australian families living with Rett syndrome

Urbanowicz, A., Downs, J., Bebbington, A., Jacoby, P., Girdler, S. & Leonard, H., 2011, In : Research in Autism Spectrum Disorders. 5, 2, p. 722-732

Research output: Contribution to journalArticle

13 Citations (Scopus)
2019

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)
2012

Family functioning in families with a child with Down syndrome: A mixed methods approach

Povee, K., Roberts, L., Bourke, J. & Leonard, H., 2012, In : Journal of Intellectual Disability Research. 56, 10, p. 961-973

Research output: Contribution to journalArticle

42 Citations (Scopus)
12 Downloads (Pure)
2011
6 Citations (Scopus)
2015

There is variability in the attainment of developmental milestones in the CDKL5 disorder

Fehr, S., Leonard, H., Ho, G., Williams, S., De Klerk, N., Forbes, D., Christodoulou, J. & Downs, J., 5 Jan 2015, In : Journal of Neurodevelopmental Disorders. 7, 2, p. 1-13

Research output: Contribution to journalArticle

Open Access
27 Citations (Scopus)
2013

Pubertal trajectory in females with Rett syndrome: A population-based study

Knight, O., Bebbington, A., Siafarikas, A., Woodhead, H., Girdler, S. & Leonard, H., Nov 2013, In : Brain and Development. 35, 10, p. 912-920

Research output: Contribution to journalArticle

5 Citations (Scopus)
2019
Open Access
2013

Role of public and private funding in the rising caesarean section rate: A cohort study

Einarsdottir, K., Haggar, F., Pereira, G., Leonard, H., De Klerk, N., Stanley, F. & Stock, S., 2013, In : BMJ Open. 3, p. 8pp

Research output: Contribution to journalArticle

Open Access
26 Citations (Scopus)
2017

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
31 Citations (Scopus)
313 Downloads (Pure)
2012
11 Citations (Scopus)
2014

Community participation: Conversations with parent-Carers of young women with Rett syndrome

Walker, E. M., Crawford, F. & Leonard, H., 2014, In : Journal of Intellectual and Developmental Disability. 39, 3, p. 243-252

Research output: Contribution to journalArticle

6 Citations (Scopus)
2019

Association between interpregnancy interval and adverse birth outcomes in women with a previous stillbirth: an international cohort study

Regan, A. K., Gissler, M., Magnus, M. C., Håberg, S. E., Ball, S., Malacova, E., Nassar, N., Leonard, H. & Pereira, G., 13 Apr 2019, In : The Lancet. 393, 10180, p. 1527-1535 9 p.

Research output: Contribution to journalArticle

Open Access
File
7 Citations (Scopus)
404 Downloads (Pure)
2011

Autism and intellectual disability are differentially related to sociodemographic background at birth

Leonard, H., Glasson, E., Nassar, N., Whitehouse, A., Bebbington, A., Bourke, J., Jacoby, P., Dixon, G., Malacova, E., Bower, C. & Stanley, F., 2011, In : PLoS One. 6, 3, p. e17875

Research output: Contribution to journalArticle

Open Access
61 Citations (Scopus)
2016

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)
2018

An investigation of the determinants of quality of life in adolescents and young adults with Down syndrome

Haddad, F., Bourke, J., Wong, K. & Leonard, H., 1 Jun 2018, In : PLoS One. 13, 6, 0197394.

Research output: Contribution to journalArticle

Open Access
3 Citations (Scopus)
2013

Changes in risk factors for preterm birth in Western Australia 1984-2006

Hammond, G., Langridge, A., Leonard, H., Hagan, R., Jacoby, P., De Klerk, N., Pennell, C. & Stanley, F., Aug 2013, In : BJOG: an International Journal of Obstetrics and Gynaecology. 120, 9, p. 1051-1060

Research output: Contribution to journalArticle

Open Access
17 Citations (Scopus)
2014

Influence of the environment on participation in social roles for young adults with down syndrome

Foley, K-R., Girdler, S., Bourke, J., Jacoby, P., Llewellyn, G., Einfeld, S., Tonge, B., Parmenter, T. R. & Leonard, H., 26 Sep 2014, In : PLoS One. 9, 9, 11 p., e108413.

Research output: Contribution to journalArticle

Open Access
File
15 Citations (Scopus)
208 Downloads (Pure)
2013

Maternal Conditions and Perinatal Characteristics Associated with Autism Spectrum Disorder and Intellectual Disability

Langridge, A., Glasson, E., Nassar, N., Jacoby, P., Pennell, C., Hagan, R., Bourke, J., Leonard, H. & Stanley, F., 2013, In : PLoS One. 8, 1, p. 10pp

Research output: Contribution to journalArticle

Open Access
File
66 Citations (Scopus)
150 Downloads (Pure)
2017

A qualitative investigation of recovery after femoral fracture in Rett syndrome

Horne, T., Leonard, H., Stannage, K. & Downs, J., 1 Mar 2017, In : Child: Care, Health and Development. 43, 2, p. 232-239 8 p.

Research output: Contribution to journalArticle

Open Access
File
2 Citations (Scopus)
346 Downloads (Pure)