HELEN M LEONARD

Summary

Affiliation: University of Western Australia
Country: Australia

Publications

  1. pmc Neonatal outcomes after preterm birth by mothers' health insurance status at birth: a retrospective cohort study
    Kristjana Einarsdóttir
    Telethon Institute for Child Health Research, Centre for Child Health Research, University of Western Australia, 100 Roberts Road, Subiaco, WA 6008, Australia
    BMC Health Serv Res 13:40. 2013
  2. doi request reprint The experiences of mothers of young adults with an intellectual disability transitioning from secondary school to adult life
    Paula Dyke
    Telethon Institute for Child Health Research, Centre for Child Health Research, University of Western Australia, Perth, WA, Australia
    J Intellect Dev Disabil 38:149-62. 2013
  3. ncbi request reprint Genotype and early development in Rett syndrome: the value of international data
    Helen Leonard
    Telethon Institute for Child Health Research, Centre for Child Health Research, The University of Western Australia, Perth, Western Australia
    Brain Dev 27:S59-S68. 2005
  4. doi request reprint Valproate and risk of fracture in Rett syndrome
    H Leonard
    Telethon Institute for Child Health Research, Centre for Child Health Research, University of Western Australia, West Perth, Western Australia
    Arch Dis Child 95:444-8. 2010
  5. ncbi request reprint Relation between intrauterine growth and subsequent intellectual disability in a ten-year population cohort of children in Western Australia
    Helen Leonard
    Telethon Institute for Child Health Research, Centre for Child Health Research, University of Western Australia, West Perth, Australia
    Am J Epidemiol 167:103-11. 2008
  6. ncbi request reprint How can the Internet help parents of children with rare neurologic disorders?
    Helen Leonard
    Telethon Institute for Child Health Research and Centre for Child Health Research, The University of Western Australia, West Perth, Australia
    J Child Neurol 19:902-7. 2004
  7. ncbi request reprint Association of sociodemographic characteristics of children with intellectual disability in Western Australia
    Helen Leonard
    Centre for Child Health Research, Telethon Institute for Child Health Research, The University of Western Australia, P O Box 855, West Perth, WA 6872, Australia Disability Services Commission, Western Australia, Australia
    Soc Sci Med 60:1499-513. 2005
  8. ncbi request reprint Trisomy 21 and Rett syndrome: a double burden
    H Leonard
    Centre for Child Health Research, The University of Western Australia, Telethon Institute for Child Health Research, Perth, Western Australia
    J Paediatr Child Health 40:406-9. 2004
  9. ncbi request reprint Maternal health in pregnancy and intellectual disability in the offspring: a population-based study
    Helen Leonard
    Telethon Institute for Child Health Research, Centre for Child Health Research, The University of Western Australia, West Perth, Australia
    Ann Epidemiol 16:448-54. 2006
  10. doi request reprint Early determinants of fractures in Rett syndrome
    Jennepher Downs
    Centre for Child Health Research, University of Western Australia, Telethon Institute for Child Health Research, Perth, Western Australia, 6872
    Pediatrics 121:540-6. 2008

Research Grants

Collaborators

Detail Information

Publications41

  1. pmc Neonatal outcomes after preterm birth by mothers' health insurance status at birth: a retrospective cohort study
    Kristjana Einarsdóttir
    Telethon Institute for Child Health Research, Centre for Child Health Research, University of Western Australia, 100 Roberts Road, Subiaco, WA 6008, Australia
    BMC Health Serv Res 13:40. 2013
    ....
  2. doi request reprint The experiences of mothers of young adults with an intellectual disability transitioning from secondary school to adult life
    Paula Dyke
    Telethon Institute for Child Health Research, Centre for Child Health Research, University of Western Australia, Perth, WA, Australia
    J Intellect Dev Disabil 38:149-62. 2013
    ..Environmental facilitators and barriers emerged in the area of support, relationships, services, systems, and policies...
  3. ncbi request reprint Genotype and early development in Rett syndrome: the value of international data
    Helen Leonard
    Telethon Institute for Child Health Research, Centre for Child Health Research, The University of Western Australia, Perth, Western Australia
    Brain Dev 27:S59-S68. 2005
    ..Originally the syndrome was characterised as having a normal prenatal and perinatal period with later regression. Previous work has speculated that the girl with Rett syndrome may not be normal at birth...
  4. doi request reprint Valproate and risk of fracture in Rett syndrome
    H Leonard
    Telethon Institute for Child Health Research, Centre for Child Health Research, University of Western Australia, West Perth, Western Australia
    Arch Dis Child 95:444-8. 2010
    ..This study investigated the relationships between fracture risk and commonly used AEDs in Rett syndrome, a genetic disorder associated with intellectual and physical disability...
  5. ncbi request reprint Relation between intrauterine growth and subsequent intellectual disability in a ten-year population cohort of children in Western Australia
    Helen Leonard
    Telethon Institute for Child Health Research, Centre for Child Health Research, University of Western Australia, West Perth, Australia
    Am J Epidemiol 167:103-11. 2008
    ..36, 95% CI: 0.93, 6.03). These findings suggest that inappropriate intrauterine growth, less than or greater than optimal birth weight, is associated with development of ID...
  6. ncbi request reprint How can the Internet help parents of children with rare neurologic disorders?
    Helen Leonard
    Telethon Institute for Child Health Research and Centre for Child Health Research, The University of Western Australia, West Perth, Australia
    J Child Neurol 19:902-7. 2004
    ..Their impact and influence warrant attention from health professionals, including neurologists...
  7. ncbi request reprint Association of sociodemographic characteristics of children with intellectual disability in Western Australia
    Helen Leonard
    Centre for Child Health Research, Telethon Institute for Child Health Research, The University of Western Australia, P O Box 855, West Perth, WA 6872, Australia Disability Services Commission, Western Australia, Australia
    Soc Sci Med 60:1499-513. 2005
    ..Furthermore, many of the sociodemographic correlates identified in this study, particularly in the mild/moderate category of ID, are potentially modifiable, opening up opportunities for primary prevention...
  8. ncbi request reprint Trisomy 21 and Rett syndrome: a double burden
    H Leonard
    Centre for Child Health Research, The University of Western Australia, Telethon Institute for Child Health Research, Perth, Western Australia
    J Paediatr Child Health 40:406-9. 2004
    ..The presence of one neurological or developmental disorder does not necessarily preclude a diagnosis of Rett syndrome...
  9. ncbi request reprint Maternal health in pregnancy and intellectual disability in the offspring: a population-based study
    Helen Leonard
    Telethon Institute for Child Health Research, Centre for Child Health Research, The University of Western Australia, West Perth, Australia
    Ann Epidemiol 16:448-54. 2006
    ..The aim of the study is to investigate the relationship between common maternal conditions and intellectual disability (ID) of unknown cause in the offspring...
  10. doi request reprint Early determinants of fractures in Rett syndrome
    Jennepher Downs
    Centre for Child Health Research, University of Western Australia, Telethon Institute for Child Health Research, Perth, Western Australia, 6872
    Pediatrics 121:540-6. 2008
    ....
  11. doi request reprint Level of purposeful hand function as a marker of clinical severity in Rett syndrome
    Jenny Downs
    Centre for Child Health Research, Telethon Institute for Child Health Research, University of Western Australia, Perth, Australia
    Dev Med Child Neurol 52:817-23. 2010
    ..We investigated relationships between hand function and genotype and aspects of phenotype in Rett syndrome...
  12. ncbi request reprint Rett syndrome in Australia: a review of the epidemiology
    Crystal L Laurvick
    Telethon Institute for Child Health Research, Centre for Child Health Research, The University of Western Australia, Perth
    J Pediatr 148:347-52. 2006
    ..To examine the prevalence, cumulative incidence, and survival in an Australian cohort with Rett syndrome (RTT)...
  13. ncbi request reprint InterRett and RettBASE: International Rett Syndrome Association databases for Rett syndrome
    Susan Fyfe
    School of Biomedical Sciences, Curtin University of Technology, Perth, WA, Australia
    J Child Neurol 18:709-13. 2003
    ..This Web-based database will be an invaluable resource for understanding the nature of the disorder and managing children and adults with Rett syndrome...
  14. ncbi request reprint The use of cross-jurisdictional population data to investigate health indicators of child maltreatment
    Melissa O'Donnell
    Telethon Institute for Child Health Research, Centre for Child Health Research, University of Western Australia, Perth, WA, Australia
    Med J Aust 193:142-5. 2010
    ....
  15. doi request reprint Characteristics of non-Aboriginal and Aboriginal children and families with substantiated child maltreatment: a population-based study
    Melissa O'Donnell
    Telethon Institute for Child Health Research, Centre for Child Health Research, University of Western Australia, Perth, WA, Australia
    Int J Epidemiol 39:921-8. 2010
    ..To investigate specific child and parental factors associated with increased vulnerability to substantiated child maltreatment...
  16. doi request reprint Impact of scoliosis surgery on activities of daily living in females with Rett syndrome
    Jenny Downs
    Telethon Institute for Child Health Research, Centre for Child Health Research, The University of Western Australia, Perth, Western Australia
    J Pediatr Orthop 29:369-74. 2009
    ..Scoliosis is a common orthopaedic complication of Rett syndrome, and surgery is commonly used to reduce asymmetry in cases with severe scoliosis...
  17. doi request reprint Atypical presentations and specific genotypes are associated with a delay in diagnosis in females with Rett syndrome
    Stephanie Fehr
    The Telethon Institute for Child Health Research, Centre for Child Health Research, University of Western Australia, Perth, Western Australia, Australia
    Am J Med Genet A 152:2535-42. 2010
    ..R133C or p.R294X mutation. Educational resources to assist this understanding including guidance on when to request genetic testing could be useful to streamline the process of diagnosis in Rett syndrome...
  18. doi request reprint Increasing prevalence of neonatal withdrawal syndrome: population study of maternal factors and child protection involvement
    Melissa O'Donnell
    Telethon Institute for Child Health Research, 100 Roberts Rd, Subiaco, WA, 6008, Australia
    Pediatrics 123:e614-21. 2009
    ..The aim of this study was to measure the birth prevalence of neonatal withdrawal syndrome over time, associated maternal characteristics and child protection involvement...
  19. doi request reprint Association of birth outcomes and maternal, school, and neighborhood characteristics with subsequent numeracy achievement
    Eva Malacova
    Telethon Institute for Child Health Research, Centre for Child Health Research, The University of Western Australia, Subiaco, Western Australia, Australia
    Am J Epidemiol 168:21-9. 2008
    ..In summary, term birth and increased growth in head circumference and length are key birth characteristics associated with higher numeracy scores, especially among disadvantaged children...
  20. ncbi request reprint Feeding experiences and growth status in a Rett syndrome population
    Wendy H Oddy
    Centre for Child Health Research, University of Western Australia, Telethon Institute for Child Health Research, Perth, Australia
    J Pediatr Gastroenterol Nutr 45:582-90. 2007
    ..Feeding difficulties in Rett syndrome are complex and multifactorial. In this study, we describe the feeding experiences in Rett syndrome and examine the factors affecting growth...
  21. doi request reprint Intellectual disability co-occurring with schizophrenia and other psychiatric illness: population-based study
    Vera A Morgan
    Neuropsychiatric Epidemiology Research Unit, School of Psychiatry and Clinical Neurosciences, The University of Western Australia, Australia
    Br J Psychiatry 193:364-72. 2008
    ..The separation of mental health from intellectual disability services has led to a serious underestimation of the prevalence of dual diagnosis, with clinicians ill-equipped to treat affected individuals...
  22. ncbi request reprint The diagnosis of autism in a female: could it be Rett syndrome?
    Deidra J Young
    Centre for Child Health Research, Telethon Institute for Child Health Research, University of Western Australia, Perth, WA, Australia
    Eur J Pediatr 167:661-9. 2008
    ..We recommend that females who are initially considered to have autism be carefully monitored for the evolution of the signs and symptoms of Rett syndrome...
  23. pmc The association between behavior and genotype in Rett syndrome using the Australian Rett Syndrome Database
    Laila Robertson
    Telethon Institute for Child Health Research, Centre for Child Health Research, The University of Western Australia, Western Australia, Australia
    Am J Med Genet B Neuropsychiatr Genet 141:177-83. 2006
    ..Some behaviors differ according to genetic mutation but there is both inter and intra mutation variation in behavior and there is a need for larger studies involving international collaboration to improve statistical power...
  24. ncbi request reprint Effectiveness of posthumous molecular diagnosis from a kept baby tooth
    Helen Leonard
    Centre for Child Health Research, University of Western Australia, Telethon Institute for Child Health Research, Perth, Western Australia
    Lancet 366:1584. 2005
  25. ncbi request reprint Physical and mental health of mothers caring for a child with Rett syndrome
    Crystal L Laurvick
    Telethon Institute for Child Health Research, University of Western Australia, Perth, Western Australia, Australia
    Pediatrics 118:e1152-64. 2006
    ..Our goal was to investigate the physical and mental health of mothers who care for a child with Rett syndrome...
  26. ncbi request reprint Health service use in Rett syndrome
    Hannah Moore
    Telethon Institute for Child Health Research and Centre for Child Health Research, University of Western Australia, Perth, Western Australia
    J Child Neurol 20:42-50. 2005
    ..Both genetic and sociodemographic determinants of health service use were identified, with important implications for the optimal and equitable management of children with Rett syndrome...
  27. ncbi request reprint The epidemiology of mental retardation: challenges and opportunities in the new millennium
    Helen Leonard
    Centre for Child Health Research, The University of Western Australia, Telethon Institute for Child Health Research, West Perth, Australia
    Ment Retard Dev Disabil Res Rev 8:117-34. 2002
    ..However, in order to apply to MR the "prevention-intervention-research" cycle, which surely underpins all epidemiology, it is vital to ensure that the methodological challenges we raise are adequately addressed...
  28. ncbi request reprint Prevalence of intellectual disability in Western Australia
    Helen Leonard
    Centre for Child Health Research, The University of Western Australia, Telethon Institute for Child Health Research, Western Australia
    Paediatr Perinat Epidemiol 17:58-67. 2003
    ..3). Although prevalence of intellectual disability has been found to vary according to study location, method of ascertainment and criteria used, these estimates are similar to estimates from several recent studies...
  29. pmc Sleep problems in Rett syndrome
    Deidra Young
    Centre for Child Health Research, Telethon Institute for Child Health Research, University of Western Australia, 100 Roberts Road, Subiaco, WA 6008, Australia
    Brain Dev 29:609-16. 2007
    ..R294X or p.R306C mutations. Sleep problems are common in Rett syndrome and there is some variation with age and mutation type...
  30. doi request reprint Stereotypical hand movements in 144 subjects with Rett syndrome from the population-based Australian database
    Philippa Carter
    Telethon Institute for Child Health Research, Centre for Child Health Research, The University of Western Australia, West Perth, Western Australia
    Mov Disord 25:282-8. 2010
    ..Results were similar for all cases and when restricted to those with a pathogenic mutation. Hand stereotypies changed with increasing age but limited relationships with MECP2 mutations were identified...
  31. doi request reprint Autism spectrum disorders in young children: effect of changes in diagnostic practices
    Natasha Nassar
    Telethon Institute for Child Health Research, Centre for Child Health Research, The University of Western Australia, West Perth, WA, Australia
    Int J Epidemiol 38:1245-54. 2009
    ....
  32. ncbi request reprint Predictors of scoliosis in Rett syndrome
    Sarah Ager
    Telethon Institute for Child Health Research and Centre for Child Health Research, University of Western Australia, West Perth, WA 6872, Australia
    J Child Neurol 21:809-13. 2006
    ..When seven common point mutations and large genomic and C-terminal deletions were compared, the R294X mutation appeared to provide some protective effect against the development of scoliosis...
  33. ncbi request reprint Co-occurrence of birth defects and intellectual disability
    Beverly Petterson
    Telethon Institute for Child Health Research, Centre for Child Health Research, University of Western Australia, West Perth, WA 6872, Australia
    Paediatr Perinat Epidemiol 21:65-75. 2007
    ..4] respectively. The data are useful for those providing services for children with developmental disabilities especially for predicting family support and respite and accommodation requirements for children and adults with severe ID...
  34. ncbi request reprint p.R270X MECP2 mutation and mortality in Rett syndrome
    Le Jian
    Telethon Institute for Child Health Research, Centre for Child Health Research, The University of Western Australia, Perth, Western Australia, Australia
    Eur J Hum Genet 13:1235-8. 2005
    ..94, P=0.01). Our observation of a reduced survival associated with the p.R270X mutation offers an explanation for the under representation of p.R270X in older subjects with Rett syndrome...
  35. pmc Physical and mental health in mothers of children with Down syndrome
    Jenny Bourke
    Telethon Institute for Child Health Research, Centre for Child Health Research, University of Western Australia, Perth, Western Australia
    J Pediatr 153:320-6. 2008
    ..To identify the relationship between characteristics of the child with Down syndrome and the health of their mother...
  36. ncbi request reprint Trends in pre-existing mental health disorders among parents of infants born in Western Australia from 1990 to 2005
    Melissa O'Donnell
    Centre for Child Health Research, University of Western Australia, Perth, WA, Australia
    Med J Aust 198:485-8. 2013
    ..To determine the prevalence of prior and current mental health disorders in parents, including trends over time...
  37. doi request reprint Linking MECP2 and pain sensitivity: the example of Rett syndrome
    Jenny Downs
    Telethon Institute for Child Health Research, Centre for Child Health Research, The University of Western Australia, West Perth, Australia
    Am J Med Genet A 152:1197-205. 2010
    ..Clinical practice should include a low threshold for the clinical assessment of potential injuries in Rett syndrome...
  38. ncbi request reprint Predictors of seizure onset in Rett syndrome
    Le Jian
    Centre for Child Health Research, The University of Western Australia, Telethon Institute for Child Health Research, Perth, Western Australia, Australia
    J Pediatr 149:542-7. 2006
    ..To investigate risk factors for seizure onset in Rett syndrome...
  39. doi request reprint Parental experiences of scoliosis management in Rett syndrome
    Sarah Ager
    Genetic Services of Western Australia, King Edward Memorial Hospital, Perth, Western Australia
    Disabil Rehabil 31:1917-24. 2009
    ..Parents of affected individuals are vital partners in the clinical management of scoliosis and this study explored parental experiences of various aspects of different management options...
  40. pmc Seizures in Rett syndrome: an overview from a one-year calendar study
    Le Jian
    Centre for Child Health Research, The University of Western Australia, Telethon Institute for Child Health Research, West Perth, WA 6872, Australia
    Eur J Paediatr Neurol 11:310-7. 2007
    ..It is principally caused by mutations in the MECP2 gene. Seizures occur in about 80% of subjects but there has been little research into the factors contributing to their frequency...
  41. doi request reprint Guidelines for management of scoliosis in Rett syndrome patients based on expert consensus and clinical evidence
    Jenny Downs
    Centre for Child Health Research, Telethon Institute for Child Health Research, Perth, Australia
    Spine (Phila Pa 1976) 34:E607-17. 2009
    ..Modified Delphi technique...

Research Grants5

  1. Rett syndrome: determinants of outcome and burden
    Helen Leonard; Fiscal Year: 2007
    ..Feedback to families on study progress will be given through the study Web site. ..