Long Term Outcomes Of Infant Lung Function In Cystic Fibrosis
Funder
National Health and Medical Research Council
Funding Amount
$509,456.00
Summary
We have shown that babies with cystic fibrosis (CF) who are apparently well can still have lung problems. As lung disease is the major cause of death in CF we need ways to monitor the condition in babies, identify those at greatest risk of lung changes and predict which children should receive newer treatments. We have developed a unique program for the measurement of lung function in babies. We now aim to find out the long term consequences of lung function changes detected in infants with CF.
The Role Of Emerging Gastrointestinal Viruses In The First Two Years Of Life: A Birth Cohort Study
Funder
National Health and Medical Research Council
Funding Amount
$392,534.00
Summary
Gastro illnesses are common and potentially serious early in life. We are aiming to find out more about these illnesses by following ~140 children from birth to their second birthday, with parents collecting a dirty nappy swab every week. Our laboratory will test these samples for a wide range of known and new gastro viruses, and we will also be looking for, as yet, undiscovered viruses. This information will allow us to document the burden of these illnesses in young children and their families ....Gastro illnesses are common and potentially serious early in life. We are aiming to find out more about these illnesses by following ~140 children from birth to their second birthday, with parents collecting a dirty nappy swab every week. Our laboratory will test these samples for a wide range of known and new gastro viruses, and we will also be looking for, as yet, undiscovered viruses. This information will allow us to document the burden of these illnesses in young children and their families.Read moreRead less
EVALUATION OF THE EFFECTIVENESS OF EXPANDED NEWBORN SCREENING BY TANDEM MASS SPECTROMETRY
Funder
National Health and Medical Research Council
Funding Amount
$375,250.00
Summary
Newborn babies in Australia are routinely tested for certain treatable disorders. Testing began in the 1960's with systematic testing for phenylketonuria, a rare amino acid enzyme defect. It causes severe mental retardation which can only be prevented if treatment is begun in the first few weeks of life. By 1997, only three other disorders, congenital hypothyroidism, cystic fibrosis, and galactosaemia, had been added to the testing protocol as tests became available. Using the new technology of ....Newborn babies in Australia are routinely tested for certain treatable disorders. Testing began in the 1960's with systematic testing for phenylketonuria, a rare amino acid enzyme defect. It causes severe mental retardation which can only be prevented if treatment is begun in the first few weeks of life. By 1997, only three other disorders, congenital hypothyroidism, cystic fibrosis, and galactosaemia, had been added to the testing protocol as tests became available. Using the new technology of tandem mass spectrometry (MSMS) it is now possible to screen for up to 30 extremely rare, treatable metabolic disorders simultaneously and cheaply, but it is not clear how effective this is. A formal trial of MSMS screening, randomly assigning babies to be tested or not tested, does not seem feasible because of the rarity of the individual disorders (most with a birth prevalence much less than 1: 50,000). Huge numbers would be needed in the trial for statistical significance. We began MSMS screening in NSW April 1998 and in South Australia in February 1999. Victoria is proposing to start screening now, but there are as yet no plans for this screening in the other states. We would like to assess the effectiveness of MSMS newborn screening using the best possible evidence drawn from all data available in the whole of Australia. We plan to undertake an economic evaluation, comparing costs and benefits such as development, hospitalisations, medical complications and other outcome measures, in screened and unscreened babies and also assess harms from screening. Because only 6 specialised laboratories in Australia, in Brisbane (2), Sydney, Melbourne, Adelaide, and Perth can diagnose these disorders, we are confident that we know of all diagnosed cases of the disorders in question. We hope to be able to show whether or not there is a benefit to affected babies by implementing newborn screening tests for these rare diseases.Read moreRead less
Improving The Long-term Quality Of Life For Preterm Children
Funder
National Health and Medical Research Council
Funding Amount
$638,517.00
Summary
My vision is to improve the long-term quality of life of preterm children (<37 weeks’ gestation), with a specific focus on those born very preterm (VP; <32 weeks’ gestation). To achieve this goal my research has two broad and related aims: 1) Determine the neurological and socio-environmental mechanisms leading to impairments in preterm children; and 2) Develop and assess the efficacy of perinatal and early intervention programs for preterm children.
Neurobehaviour Between Birth And 40 Weeks In Infants Born
Funder
National Health and Medical Research Council
Funding Amount
$832,215.00
Summary
Very preterm infants (born at <30 weeks’ gestation) are at risk of long term developmental problems with 50% having cognitive, motor or behavioural problems. This study will examine, for the first time, neurobehavioral development of very preterm infants from birth so that we can describe neurobehaviour for a given gestation from birth to term equivalent age, and explore how it relates to brain growth or injury and to neurodevelopmental outcome at two years’ corrected age.
Australasian Cerebral Palsy Clinical Trials Network (AusCP-CTN): Optimising Interventions And Effective Services For Children With Cerebral Palsy
Funder
National Health and Medical Research Council
Funding Amount
$2,499,287.00
Summary
Cerebral Palsy (CP) is common and disability can be progressive so the heathcare burden is immense (0.14% GDP). Our Clinical trials network will improve early detection and develop new interventions to improve physical, cognitive and health outcomes for children with CP and their families. Recruitment from the national CP Register will address clinically important questions and test implementation of effective treatments. New Clinical Practice Guidelines will ensure translation internationally.