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Spring Edition - September 2020
Spring Edition - September 2020
In this edition:
‘Good enough’ is not enough
The majority of children and young people with mental health problems are not receiving even ‘minimally adequate’ treatment to help them recover.
For those who do receive ‘minimally adequate’ treatment, it isn’t helping them to improve.
A new MCRI study is the first time that anyone has shown whether the minimum level of treatment has any effect at all.
Mental health disorders affect more than one in 10 children worldwide. Of those children, half to three-quarters of them go completely untreated.
Professor Harriet Hiscock, who leads MCRI’s Health Services research, said these findings were important messages for the Royal Commission into Victoria's Mental Health System, which is due to hand down its final report next year.
“What we are doing now is not working and we can’t afford to be providing inadequate treatment to young children struggling with mental health problems,” says Harriet.
“It’s clear the way we measure mental healthcare outcomes in Australia is not sufficient and a shake up to the system is needed.”
Minimally adequate treatment for children is defined as either eight or more mental health visits, or four to seven visits in a 12-month period alongside relevant medication.
Find the news release and a link to the study on the MCRI website.
Beyond the lungs: stem cells and COVID-19
As the pandemic has grown, we have learnt more about the complexities and long-term implications of COVID-19. It is increasingly clear that it impacts much more than the lungs.
It is damaging people’s hearts, blood vessels, cognitive function and more.
Stafford Fox Medical Research Foundation Stem Cell Medicine Disease Modelling and Drug Screening Facility is the first of its kind in Australia and is uniquely placed to make a vital difference.
Using stem cells created in the lab from a simple blood sample, the team led by MCRI’s Professor Melissa Little grows miniature hearts, brains, kidneys, lungs and other tissues. These miniature organs are then infected with COVID-19 to see the virus’s impact in real time.
Melissa says the research team’s ability to combine different cell types would allow them to investigate how the virus spreads in organs and how infected cells respond to each other.
“There is growing evidence that SARS-CoV-2, the virus that causes COVID-19, can damage organs beyond lungs, including the heart, blood vessels, immune cells, kidney and even neural tissue.
But a limited understanding of the impact of SARS-CoV-2 on such tissues limits our capacity to treat patients in the most appropriate way and anticipate long-term complications.”
Studying the virus’s impact safely in the lab allows us to understand why and how the virus is attacking different organs and tissues, and the precise mechanisms it’s using to do damage. That knowledge can then support better, more targeted treatments.
The complications of cancer treatment
Having your child diagnosed with cancer is one of the worst scenarios imaginable. But what if the cancer treatment that saved their life created another life-threatening health problem?
Anti-cancer therapies successfully treat 80 per cent of children with cancer, but they sadly cause heart disease in many survivors. In fact, survivors of childhood cancer are 15 times more likely to have heart failure than the general population.
A national trial at MCRI is working to find out the factors that make some cancer patients susceptible to heart damage. The trial is recruiting patients who are currently or have previously been treated for cancer with therapies including chemotherapy, radiotherapy and immunotherapy.
Cancer survivors can be of any age, including children, adolescents and adults.
The Australian Cardio Oncology Registry (ACOR)/Bio-bank study is a national first and the largest of its kind in the world.
Associate Professor Rachel Conyers, a paediatric oncologist at MCRI, is calling for a major change to the way we manage, diagnose, treat and monitor cancer therapeutic-related cardiovascular diseases.
She highlights the vital group of cancer drugs called anthracyclines, which are used to treat more than 70 per cent of childhood, adolescent and adult cancers.
“Anthracyclines have boosted childhood cancer survival rates dramatically,” says Rachel. “But anthracyclines can have irreversible and sometimes fatal side effects, with up to 7 per cent of patients developing severe heart complications.”
The study wants to change the way we treat cancers to one that is more personalised and “improves the long-term quality of life of cancer survivors”.
“Our ultimate goal is that after a child is diagnosed with cancer, we would immediately run a genetic test to see if they are at risk of heart damage. We will then be able to use protective medications” says Rachel.
To learn more about the study or the registration process visit www.acor-registry.org.au
An eggs-cellent opportunity
Professor Mimi Tang found a way to tackle peanut allergy and now she’s turning her attention to egg – and she’s looking for egg-allergic children and young people to help.
Mimi says that food allergies affect up to six per cent of children and one in 10 babies. “And egg allergy is one of the most common food allergies in childhood - almost 9 per cent of babies in Australia.”
She says most people with egg allergy have no choice but to avoid all foods containing eggs.
“Because eggs are a common cooking ingredient, accidental ingestion is common, causing frequent and sometimes life-threatening reactions.”
The new trial is recruiting 80 children and adolescents who are allergic to egg to test a pioneering new approach to food allergies. Specifically, she’s looking for families with children aged five to 17 years who are allergic to hen eggs to take part in the new PEAT trial.
“If we can show that the probiotic food immunotherapy approach is effective in treating egg allergies as well, this will mean that we could perhaps extend treatment to other food allergies too.”
To find out more about taking part, visit the PEAT trial
Healthcare of the future
By supporting Australians to have a healthier, better connected future with the AllergyPal app, MCRI’s allergy team has picked up a $50,000 digital health innovation award.
AllergyPal helps children and families who have a food allergy to get all the allergy management information and resources they need, right there on their mobile phone.
The app provides ready access to a child's allergy plan, interactive guidance on how to manage allergic reactions in an emergency and a way for parents to leave individualised instructions on their preferred approach to allergen avoidance.
Most importantly, it has a share function that lets parents give other carers direct access to all of the features of AllergyPal when leaving their child with friends and family.
It was developed by MCRI’s Professor Mimi Tang in collaboration with Allergy and Anaphylaxis Australia and the Australasian Society of Clinical Immunology and Allergy.
Mimi says, "We are very proud to be an inaugural winner of this award from the Australian Digital Health Agency (ADHA), and look forward to working with them. We plan to extend the platform to reach more families and further develop AllergyPal to improve continuity of care and health outomes for children with food allergy.
“We want parents to feel supported and have peace of mind that their child is kept safe at all times, especially when left in the care of others."
MCRI also partnered with Curve Tomorrow to develop AllergyPal. Curve Tomorrow is a technology company that is passionate about changing the direction of health.
The Australian Digital Health Agency Innovation Challenge champions digital health innovation to provide a healthier future for Australians through connected healthcare.
For more details see: www.mcriallergypal.com.au
Why do cell’s ‘powerplants’ fail?
At least one in 5000 babies is born with a mitochondrial disease, where the ‘powerplants’ of the cells fail. Now, researchers at MCRI have found the elusive answer to what makes that failure happen.
Mitochondrial diseases can have a devastating impact on a single system of the body, which could lead to poor development or muscle weakness. In some cases, the disease affects every cell in the body, leading to death.
The impact of this ‘powerplant’ failure means that most children with mitochondrial disease die before they reach adulthood.
Mistakes in any one of around 350 genes can lead to mitochondrial disease, which makes identifying a single cause akin to searching for a needle in a haystack. Now, MCRI researchers have identified the specific gene cluster that is the most common cause of lethal mitochondrial disease. The cluster is called ATAD3.
MCRI’s Professor David Thorburn provided oversight for the discovery, which was driven by Dr's Ann Frazier and Alison Compton.
David says, “Our team has shown that ATAD3 genes can be mistakenly copied and pasted next to themselves. These duplications create a faulty protein that disrupts normal ATAD3 function, sadly resulting in fatal heart failure around the time of birth.
“What’s exciting for families involved in this study is that we have given them the confidence to plan for another baby, knowing that yes, they may have experienced some awful luck, but that it has an extremely low chance of happening again.”
MCRI Professor John Christodoulou, who co-led the study, said, “The study highlights the importance of continual improvement in our screening capabilities.
“We might not have the technology or the insights to diagnose every genetic disease yet, but we are constantly making these incremental advances and providing answers to our families, even years or decades later. Their invaluable contribution means another family may be spared the same pain.”
Watch David explain mitochondrial disease, along with a patient who has the disease.
A little girl, a wombat and four generations of disease
On a farm in Victoria you can find a little girl called Isabella and her pet wombat Boo. Together, they’re a dynamic and inseparable team. But the genetic disorder neurofibromatosis could be lurking in Isabella’s genes.
If Isabella has neurofibromatosis, or NF1, it would make her the fourth generation in her family to suffer from the disease.
NF1 causes tumours to form on nerve tissue, including on the brain, spinal cord and nerves. It affects around 1 in 2500 people worldwide, and there are about 10,000 Australians currently living with the condition.
The disease can vary widely in its severity. As well as the tumours, it often causes neurodevelopmental disorders, delayed or impaired development. Around 40 per cent of affected kids have ADHD, one quarter have autism spectrum disorder and up to half have learning difficulties like dyslexia.
Isabella’s aunty Zoe was diagnosed with NF1 when she was just four months old. She and her mum Anna, Isabella’s grandma, started the Flicker of Hope foundation to try to promote research into the disease that has impacted the lives of so many in their family.
“I started Flicker of Hope with my mum to raise awareness of the condition and drive fundraising for research,” says Zoe.
“There just wasn’t much work being done, and it’s incredible to see how fast scientists can make progress when they have some decent support behind them.”
Flicker of Hope raised $500,000 in just 12 months to help MCRI’s Associate Professor Jonathan Payne and his team make the TiNT trial a reality. Further funding from the Medical Research Future Fund, and significant in-kind support have also played a major role.
TiNT is an Australian-first drug trial, which will test the use of a drug to stop the tumours growing. Jonathan says “It’s not a nice condition to live with. There’s always that cloud in the background that the condition could progress.
“This funding means that we can treat tumours we wouldn’t have otherwise been able to treat.”
Find out more about the Flicker of Hope foundation and support their work.
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