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Health professionals' perceptions about the adoption of existing guidelines for the diagnosis of fetal alcohol spectrum disorders in Australia

Despite the availability of five guidelines for the diagnosis of fetal alcohol spectrum disorders (FASD), there is no national endorsement for their use in...

Development of a video-based evaluation tool in Rett syndrome

This paper describes the development of a video-based evaluation tool for use in Rett syndrome (RTT).

Heavy prenatal alcohol exposure and increased risk of stillbirth

The objective was to investigate the association between heavy prenatal alcohol exposure and stillbirth.

Seizures in Rett syndrome: an overview from a one-year calendar study

Information on daily seizure occurrence and health service utilization and monthly anti-epileptic drug use was provided on 162 Rett syndrome cases for a...

Recording a history of alcohol use in pregnancy: an audit of knowledge, attitudes and practice at a child development service

To assess the effectiveness of alcohol documentation and to measure the practice of health practitioners in relation to asking about alcohol and pregnancy.

Delineation of large deletions of the MECP2 gene in Rett syndrome patients, including a familial case with a male proband

Comprehensive genetic screening programs have led to the identification of pathogenic methyl-CpG-binding protein 2 (MECP2) mutations...

A new method of prenatal alcohol classification accounting for dose, pattern and timing of exposure:

When examining the association between prenatal alcohol exposure and fetal effects, the timing and intensity of exposure have been ignored in epidemiological st

Physical and mental health of mothers caring for a child with Rett syndrome

This study compared the behavior profile of cases in the Australian Rett Syndrome Database (ARSD) with those in a British study using the Rett Syndrome...

Caudal dysgenesis and sirenomelia-single centre experience suggests common pathogenic basis

Abnormally formed lower limbs with varying degrees of fusion are the major feature of sirenomelia whereas maldeveloped lower limbs without fusion are found in a

Prenatal alcohol exposure and risk of birth defects

The goal was to examine the associations between dose, pattern, and timing of prenatal alcohol exposure (PAE) and birth defects.

Early progressive encephalopathy in boys and MECP2 mutations

MECP2 mutations mainly occur in females with Rett syndrome. Mutations have been described in 11 boys with progressive encephalopathy...

Lost in translation: translational interference from a recurrent mutation in exon 1 of MECP2

Rett syndrome (RTT) is an X linked neuro-developmental disorder affecting mostly girls. Mutations in the coding region of MECP2 are found in 80% of classic...

Women's knowledge and attitudes regarding alcohol consumption in pregnancy: a national survey

Alcohol exposure in pregnancy is a common and modifiable risk factor for poor pregnancy and child outcomes.

Evidence of a complex association between dose, pattern and timing of prenatal alcohol exposure and child behaviour problems

There is a lack of evidence regarding the effect of dose, pattern and timing of prenatal alcohol exposure and behaviour problems in children aged 2 years.

NTNG1 mutations are a rare cause of Rett syndrome

A translocation that disrupted the netrin G1 gene (NTNG1) was recently reported in a patient with the early seizure variant of Rett syndrome (RTT).

Professor Carol Bower

Senior Principal Research Fellow; Director, FASD Research Australia

The association between behaviour and genotype in Rett Syndrome using the Australian Rett Syndrome Database

This study compared the behavior profile of cases in the Australian Rett Syndrome Database (ARSD) with those in a British study using the Rett Syndrome...

Rare Diseases

While individual diseases are rare, as a group, rare diseases are common. Recent estimates suggest that between 3% and 6% of the world’s population are affected by rare disease.

Top honour for folate hero Carol Bower

A huge congratulations to The Kids Research Institute Australia founding researcher, Emeritus Professor Carol Bower, who has been recognised in the King’s Birthday Honours for her profound impact on child and public health over a 40-year career.