Latest Posts

Clinical and genetic challenges of mitochondrial disorders. What does Maeve’s Law offer?

The primary mitochondrial oxidative phosphorylation disorders are characterized by clinical and genetic heterogeneity, limited treatment options, and poor outcomes.  Part of the complexity is because both the nuclear and mitochondrial genomes may be involved.  Mitochondrial DNA is maternally inherited.  From a reproductive counselling perspective, couples with a family history of mitochondrial DNA disease often have limited reproductive options available to them.

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Generation Victoria (GenV): Every baby. Every parent. Everybody.

Very large, truly population-representative pregnancy cohorts are rare internationally. Generation Victoria (GenV) is a whole-state cohort targeting all newborns (~150,000) and their parents over 2 full years. Components include (i) families recruited soon after birth, (ii) biospecimens from pregnancy onwards, (iii) extensive data linkage supplemented by (iv) minimal GenV collected data, all enabling (v) many additional integrated research studies, both observational and interventional.

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Finding a way through the challenges and turmoil of the experience of sibling sexual abuse: How hope can help

Sibling sexual abuse is 3-5 times more common than father/step-father abuse. This study looked past the factors that might contribute to the occurrence of sibling sexual abuse with the aim of better understanding the experience of therapists working with families with such experience and collaboratively developing principles to guide practice in this complex area of child sexual abuse.

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The Colorectal and Pelvic Reconstruction Service: Leadership and innovation for children with complex colorectal conditions

The Colorectal and Pelvic Reconstruction Service was created in 2019 to provide world-class care for children and families affected by complex colorectal conditions. Through the combined support of the RCH Foundation, the Victorian Government and the Federal Government, the service acts as a national leader for children born with anorectal malformations or Hirschsprung disease, and children affected by chronic constipation. 

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Measuring and moving on the child and youth mental healthcare system: Reflections from Canada

This session will describe a 10 year initiative to develop a data and evaluation platform for children and youth mental health and service delivery in Ontario, Canada’s largest province.  The session will touch on the advantages and limitations of using routinely collected health system data for surveillance and performance measurement, and challenges in evaluating a large, system wide policy strategy to improve early identification and coordination of care for children and youth with mental health disorders. 

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3.6 million and counting: Victoria’s Newborn bloodspot screening program – recent innovations and future directions

Victoria’s newborn bloodspot screening (NBS) program commenced in 1966 with screening for phenylketonuria, and from the early 1970’s close to 100% of newborns were being screened. Improvements in analytical and genetic testing technologies saw the successive introduction of screening for congenital hypothyroidism, cystic fibrosis and 22 metabolic conditions. Today, Victoria’s NBS program detects about 80 babies per year with these conditions, preventing life-long debilitating outcomes and even death.

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NAIDOC Week The Uluru Statement from the Heart and the significance to children

The Uluru Statement from the Heart is an extraordinary united and unifying call and a unique opportunity for a better Australia. It will be talked about at length in the next few years as we move towards a referendum for Constitutional reform. The result will be crucial for child health in this country, so child health professionals need to be informed.    

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Centre for Health Analytics – one year in

Launched in June of 2021, the Centre for Health Analytics has now been operational for a year. With a vision to unleash the power of data to improve child and adolescent health, the Centre will share some early successes and show how we’re aligned to similar initiatives in the NHS. This presentation will spark new ideas of how to use data, and provide insights into how best to engage with the Centre for Health Analytics to deliver high value data rich work.

Speaker
Professor Jim Buttery is a paediatric infectious diseases physician and vaccinologist. He is the inaugural Professor of Child Health Informatics at the University of Melbourne. He is Head of Health Informatics, Epidemiology and Signal detection at SAEFVIC (MCRI) and Chief Clinical Research Information Officer & Infectious Diseases Physician at The Royal Children’s Hospital (RCH). Prof Buttery also serves as a member of the TGA Advisory Committee on Vaccines.

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