IMPACT REPORT 2019
IMPACT REPORT 2019 | 1 are at the of everything we do CONTENTS
INTRODUCTION COLLABORATING FOR 4 Message from our Director 6 Our award-winning researchers IMPACT 8 Our research at a glance 66 Early Years Initiative off to strong start 68 Bobbie brings baby’s brain to life 70 ‘Mama’ Deb’s dedication to saving TRANSLATION children in Papua New Guinea 16 Smooth sailing for Drina thanks to burden- 73 Warajanga Marnti Warranja – together we breaking technology walk on country 19 New focus on type 2 diabetes 76 FASD conference unites policy, science 20 Friendly Schools goes from strength to and lived experience strength 78 Parents helping to put FASD into 22 Landmark folate research recognised as perspective major public health achievement 79 Driving a vaccine revolution 24 Unique CliniKids a marriage of research 81 Vital role for Telethon Kids and practice 82 Global consortium aims to protect babies 26 New friend to improve social attention of from their first week of life kids with autism 83 Bill & Melinda Gates Foundation grant aims 27 National Guideline provides uniform to prevent deadly infections in early life approach to autism diagnosis 84 People power takes tiny study to the next 28 Campaign pays off as alcohol labelling level gets green light 86 Karratha family jump at chance to join 30 Banksia Hill Project’s ripple effect sleep study 32 Alcohol screening tool transforming 88 Collaboration key to wet cough maternity practice prevention 35 Atlas maps a pathway to happy, healthy 92 Child removal data fuels case for change childhood 36 New drug therapy provides hope for kids with cystic fibrosis IN THE PIPELINE 38 Game aims to alleviate depression for 96 Embracing the mental health of our trans youth children and young people 40 Helping hand on home stretch to 100 Busting myths around stillbirth adulthood 102 WA data crucial to key stillbirth finding 103 Helping kids get the most out of school 106 Energy drinks not OK for kids PARADIGM SHIFT 108 Personalised analytics propel rare disease 46 Rapid response to e-cigarette findings diagnoses 49 Let the sun shine in 110 Ending the cycle of ‘not knowing’ 52 Grant giving wings to a generation of 111 Big data science may help unlock simple Indigenous leaders test for asthma 55 Horses helping healing 114 Ending deadly heart disease finally within 56 Graduation goals for community our sights researchers 117 Finding answers for Tenaya: from a sore 58 Pioneering research could be key to throat to open-heart surgery keeping cancer in check 119 Guidelines struggle to keep pace with Our special thanks to those who have contributed to this report: Tamara Hunter, Amy Birch, Caroline 61 WA-first technique fast tracks urgent technology Wise, Tammy Gibbs, Elizabeth Chester, Stacey Campbell, Amanda Lewis, Alana Buckley-Carr, vaccine policy 121 ORIGINS Project grows in leaps and Kate Harford, Kerry Faulkner, Alison Batcheler, Kim Cousins, Tobias Schoep, Robert Duncan, Tony 62 Researchers unlock key to slowing bounds McDonough, Ross Swanborough, and the researchers and families whose stories we have shared. leukaemia progression in kids
2 | TELETHON KIDS INSTITUTE IMPACT REPORT 2019 | 3 MESSAGE FROM OUR DIRECTOR
Jonathan Carapetis AM
In 2012, we committed to creating a new blueprint Our Impact Report shows that this is more than for a medical research institute – one that simply rhetoric. It highlights research that is making judges itself by its ability to make a difference. a difference. Some of our research is already We wanted to ensure our research was being being applied to improve real world outcomes translated into real-life outcomes for kids, young for kids. Some is well along the impact pipeline people, families and communities. While there is and some research is changing the way we think still a long way to go, we have taken big strides about complex problems. forward in delivering on that promise. Collaboration and partnerships are integral to Fast forward to 2019, and our new strategic plan achieving our mission so we also highlight some has an even stronger and bolder focus on impact. of the special partnerships we have with the community, government, service providers and Our mission is clear: to improve the health, industry. development and lives of children and young people through excellence in research – and Making a difference inspires all our work importantly, the application of that knowledge. at Telethon Kids and I am grateful to have committed staff who are passionate about living Impact, making a measurable difference, is the up to that promise, as you will see from the stories first of the four strategic pillars that underpin our in this report. work. To find out more, visit our website at For our research to have impact, it not only needs telethonkids.org.au to be high quality and innovative, it must be useful and used.
That’s why we are working closely with community, practitioners and policy makers to set research priorities. Research also needs to be translated and disseminated locally, nationally Jonathan Carapetis AM and internationally so it can lead to meaningful Director changes to policy and practice. Professor Jonathan Carapetis with Nirvana in the Discovery Centre, supported by Lotterywest
4 | TELETHON KIDS INSTITUTE The excellence of Telethon Kids Institute researchers has OUR been recognised at multiple State and National awards AWARD-WINNING ceremonies over the past year, including the Queen’s Birthday Honours, the WA Premier’s Science Awards, RESEARCHERS and the annual WA Business News 40under40 Awards.
Professor Jonathan Carapetis AM Dr Hannah Moore Member of the Order of Australia (AM) TEDx Speaker
In June 2018, Institute Director Professor Infectious diseases researcher Dr Hannah Moore had a chance Jonathan Carapetis was made a Member to share her passion for the power of data to help fight disease, of the Order of Australia (AM). The award, when she was chosen to speak at TEDx Perth in November. Dr made as part of the annual Queen’s Moore, who is Co-Head of Infectious Diseases Epidemiology for Birthday Honours, recognised his significant the Wesfarmers Centre of Vaccines and Infectious Diseases, contribution towards paediatrics and spoke to a sold-out crowd about the unmatched power of data medicine – specifically his commitment in providing the answers we need to keep kids out of hospital. to diagnosis, treatment and prevention of rheumatic heart disease. Later that month, Professor Carapetis and Head of Aboriginal Dr Shannon Simpson Health Research, Glenn Pearson, were 2019 Business News 40under40 Awards finalists at the 2018 Western Australian of the Year Awards. Internationally recognised lung health researcher Dr Shannon Simpson Professor Carapetis with WA Governor Kim Beazley was named one of WA’s top professionals under the age of 40 at the 2019 Business News 40under40 Awards. Dr Simpson won the Community/ Dr Melissa O’Donnell Social Enterprise category in recognition of her significant findings Woodside Early Career Scientist of the Year around the long-term lung health of babies surviving preterm birth, her substantial contribution towards including the community’s voice in Dr Melissa O’Donnell was named Woodside Early Career research, and her volunteer work with young people going through the Scientist of the Year at the 2018 Premier’s Science Awards, health system. in recognition of her internationally respected research on child abuse and neglect. Dr O’Donnell, co-lead of the Institute’s Linked Analytics and Social Policy Team, is one of few researchers in Australia to have extensively utilised linked government data to investigate factors that increase Dr Asha Bowen vulnerability to child maltreatment, and outcomes for these L’Oréal-UNESCO Women in Science Fellowship children (see stories on her work, pages 40 and 92) . Telethon Kids skin researcher Dr Asha Bowen was awarded a prestigious L’Oréal-UNESCO Women in Science fellowship. Her dedication to ending skin infections in Aboriginal and Torres Strait Islander children made her a clear choice as one of the Dr Melissa O’Donnell with Minister Dave Kelly most outstanding early-career female scientific researchers in and Woodside’s Tom Ridsdill-Smith Australia. She was later featured in the February issue of Vogue Dr Sally Brinkman Australia, in a spread on talented women scientists. NHMRC Research Excellence Award
Dr Sally Brinkman, Head of the Child Health Development and Education team and Director of the Fraser Mustard Centre in Adelaide, was honoured Penelope Strauss with an NHMRC Research Excellence Award for being the nation’s top- AMP Tomorrow Maker ranked applicant in the Population Health (Level 1) category of the 2018 Career Development Fellowship scheme. The awards recognise excellence Trans Pathways researcher Penelope Strauss was named an AMP Tomorrow in the health and medical research sector by celebrating individual Maker – the first researcher from the Telethon Kids Institute to win one of the achievements, leadership and the exceptional contributions of Australian annual grants. She was one of 43 young innovators chosen to share in the researchers to their fields of research. Dr Brinkman’s research is focused on $1million Tomorrow Fund. Ms Strauss’s grant will help her undertake the next improving the health and development of young children, particularly those phase of the ground-breaking Trans Pathways project, which found that young living in highly disadvantaged communities. trans people are at high risk for suicide, anxiety and serious depression.
6 | TELETHON KIDS INSTITUTE IMPACT REPORT 2019 | 7 OUR RESEARCH RESEARCH CAPACITY BUILDING AT A GLANCE 2018 BUILD We are committed to training the next generation of researchers and ensuring we build collaborative The impact of research can be measured in many ways. For networks to support child health and development research in Western Australia and beyond BUILD UNDERSTAND us at Telethon Kids, it’s about how we make a difference for children, families and communities. Here, we delve into the metrics that help define our success. This includes traditional indicators as well as the broader We join with others in large national and international collaborative networks to improve the lives of children
TRANSLATE ways our research contributes to the global understanding of INVOLVE disease, influences policy and practice, builds capacity and collaboration, and has a direct effect on the lives of children. Tackling Tackling Brain Tackling Type 1 Tackling Tackling Rheumatic Heart Cancer Diabetes Disease Leukaemia Disease BRAIN ARTIFICIAL Genetics CHILDHOOD END RHD, CANCER PANCREAS FANTOM 5 LEUKAEMIA RHD Action DISCOVERY CONSORTIUM & FANTOM 6 INTERNATIONAL & REACH CONSORTIUM
Tackling Autism Tackling Deep Tackling Tackling FASD Tackling Bullying AUTISM Disadvantage Cystic FASD NATIONAL COOPERATIVE LIFE Fibrosis RESEARCH CENTRE RESEARCH COURSE AREST CF AUSTRALIA AGAINST CENTRE CENTRE BULLYING
In 2018, we had 126 students Enrolled through:
Curtin University 15 12 Honours Edith Cowan University 2 4 Masters Murdoch University 5 STUDENTS FROM AROUND The University of Western Australia 100 AUSTRALIA AND ABROAD 20 MD University of Notre Dame Australia 1 CHOOSE TO STUDY AT THE TELETHON KIDS INSTITUTE Other 3 PhD 90 Total 126
Over the past 5 PhD years 64 STUDENTS have successfully obtained their DOCTORATE
8 | TELETHON KIDS INSTITUTE IMPACT REPORT 2019 | 9 Our knowledge benefits child WE PUBLISH in the most ADVANCING health and development INFLUENTIAL JOURNALS KNOWLEDGE researchers worldwide, we share around the world UNDERSTAND and publish our findings Our researchers contribute significantly to the global bank of information on child health and development Publications over the past 5 years 450 400 350 Total 395 We are actively collaborating with colleagues and organisations around the 300 361 361 Journal 320 348 world in a united effort to discover more about child health and development. 250 Articles* Some of our collaborations include: 200 World Map Infographic 150 99 106 100 Top 10% 82 85 NORTH AMERICA EUROPE ASIA AUSTRALIA and 50 Journals 78 • British Columbia • Imperial College London • Baranas Hindu 0 Children’s Hospital • Erasmus University University NEW ZEALAND in their field • Australian National University • Children’s National • Gustav Roussy Institute • Chinese University of 2014 2015 2016 2017 2018 • Children’s Cancer Institute Health Center • Karolinska Institute Hong Kong • Children’s Hospital Westmead • Columbia University • REACH • Hong Kong University Total Articles • Harry Perkins Institute for 41 39 • Harvard University • University Children’s • International Vaccine in journals 31 35 Medical Research 26 • Institute for Health Metrics Hospital Zurich Institute, Seoul Korea TOTAL Peer-reviewed with Impact • Menzies School of Health and Evaluation • University of Amsterdam • Papua New Guinea publications journal articles Factor >10 Research • Mount Sinai School of • University of Berlin Institute for Medical • Murdoch Children’s Medicine • University of Cambridge Research 2014 2015 2016 2017 2018 Research Institute Other publications Books and • McMaster University • University of Helsinki • Rett Syndrome • QIMR-Berghofer Medical and reports book chapters • St Jude Children’s • University of London Comprehensive *articles, letters, editorials, case reports and reviews Research Institute Research Hospital • University of Oxford Research Institute • SA Health and Medical • Stanford University • World Health Organization • RIKEN Research Institute • University for Systems • Starship Children’s Hospital Biology • The University of Auckland • University of Washington Scientists around the world use our work on child health and development to • University of Otago • Yale University advance their knowledge and research • Walter and Eliza Hall Institute
In the last 5 years our Telethon Kids has a Normalised 2018 publications have Citation Impact (NCI) of been cited more 17,861 than 74,000 times 2017 2.56 17,291 SOUTH AMERICA which is two and a half times • Instituto Nacional de Cancer higher than the world average. • Universidade Federal do Rio AFRICA 2016 Grande do Norte • Baylor College Malawi 15,530 • Universidade de Sao Paulo • Uganda Heart Institute • University of Cape Town 2015 NCI is a valuable and unbiased Selected collaborations named 19.8% indicator of impact irrespective of 13,298 age, subject focus or document We are successful at of Telethon type. Therefore, it allows comparisons work with us to make a difference for children 2014 securing a diverse mix of ers Kids papers are between entities of different sizes tn and different subject mixes. funding to do great research ar 10,856 categorized as p y r highly cited. Source: Clarivate Analytics report for which builds knowledge on t Johnson & Johnson Citation refers to a quotation or reference of our work in a s scientific article written by other researchers around the world Telethon Kids Institute, Sept 2018 health and development u d n Roche Other income i Government $6,390,380 p We are grants and o T collaborating with Pfizer contracts Our researchers are regarded as of our $24,640,661 international leaders in their field Philanthropic of the Novartis income 6 TOP 10 RESEARCHERS $76.9M international $24,316,487 pharmaceutical GlaxoSmithKline have a companies 14 worldwide Sanofi Scopus H-index* Non-Government *H-index of 40 is proposed to characterise outstanding scientists likely to be found GREATER than 40 grants and contracts only at the top universities or major research laboratories (Hirsch 2005 PNAS) 10 | TELETHON KIDS$21,635,754 INSTITUTE IMPACT REPORT 2019 | 11 INFORMING EFFECTING CHANGE INVOLVE DECISION-MAKING TRANSLATE We are working with the most relevant people around the world We ensure our research is translated into real-life outcomes that make to ensure we make a difference for children, families and communities a tangible difference to the lives of children, families and communities
We work closely with government to ensure our research has an The community is involved in informing Our clinical researchers are working impact on government policy the work that we do, ensuring it to discover and trial new interventions remains relevant and translatable to improve the health of children. We are actively involved in intervention We provide commissioned reports • Vaccines including influenza, Hib, meningococcal and studies in the following areas: • Cystic fibrosis to government on topics such as: pneumococcal • Biomarkers of obesity • Allergic disease fetal alcohol spectrum disorder 258 • Diabetes consumers and • Asthma • Skin infections early years development community • Rheumatic Heart Disease In 2018 at members 47 • Rheumatic Heart Disease bullying committees, • Group A streptococcal PREVENTION DIAGNOSIS Telethon Kids involved with youth health projects infections and programs we had: • Skin infections • Asthma • Hep B infections • Bronchiolitis We partner or collaborate with • Dermatitis UNDERSTANDING • Cystic Fibrosis state and federal • Infections & vaccines HUMAN • Autism spectrum disorders government agencies in the • Ear disease DEVELOPMENT THERAPY • Gastroenteritis areas of health, eduction, supported by the • Language development AND DISEASE • Rett syndrome 38 Consumer and Community • Newborn encephalopathy • Skin infections justice, mental health and communities Health Research Network • Obesity • Mental and youth health • Nutrition DEVICES • Infectious diseases • Hypospadias • Allergy • Asthma • Cancer with influence at the • Developmental origins of child health Our researchers Committees or Councils • Disability 62 state, national and • Genetic disorders are actively STATE • Diabetes 59 • Long-term health outcomes of young international level • Obesity involved in adults born preterm external decision- 16 Boards • Autism making groups that 67 NATIONAL are working towards 25 on Advisory Groups Pregnancy improving the lives of warning labels children and families by A national guideline on packaged Other INTERNATIONAL 37 for the assessment and Australian being involved in: 60 alcoholic WA Youth diagnosis of autism Immunisation beverages spectrum disorders in Handbook Health Policy Australia 2018-2023 Our research drives We are asked to provide our real-world changes expertise to inform work on TOTAL TIMES OUR TOTAL TIMES OUR through contributions EXPERTISE WAS PROVIDED EXPERTISE WAS INVITED child health, wellbeing and 55 44 to guidelines, policy Preschool Multiple Tools for implementing National Healthy Skin development and practice Breath Washout rheumatic heart disease Guideline; for the Prevention, Testing: An official control programmes - Treatment and Public Health In 2018, we contributed to*: ATS Technical Quick Tips - 2nd Edition Control of Impetigo, Scabies, Independent Review of the Department of Standard Victorian Government Crusted Scabies and Tinea WA Human Reproductive Communities 10-Yr Strategy *Selected contributions named Transgender Policy for Indigenous Populations Technology Act 1991 on Homelessness NSW Anti-bullying Strategy and Communities in Australia
Royal Commission into the Senate Select Committee WA Youth Protection and Detention of inquiry on Stillbirth Research Our research has direct commercial relevance, Health Policy Children in the NT and Education which we protect to ensure that the inventions active patents *Selected contributions named have the potential to make it to the clinic 12
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This research has been actively translated into policy or practice TRANSLATION
SMOOTH SAILING FOR DRINA THANKS TO BURDEN-BREAKING TECHNOLOGY
oon-to-be teenager Drina Bucktin loves hanging out with her friends and making the most of her new-found independence. This freedom hasn’t Salways been a given, however. Drina has type 1 diabetes, a chronic disease which means every mouthful of food — or exercise, sleeping, stress or puberty — can affect her blood glucose levels.
Thankfully, recent diabetes technology The study, published in the prestigious is helping the 12-year-old keep on top Diabetes Care journal, found the of her condition and be independent, technology reduced parents’ stress and while significantly easing the disease anxiety and improved their sleep and burden on her family. family functioning.
A few years ago, Drina’s family took part in “Life is a lot less stressful on everyone and I the Children’s Diabetes Centre’s ‘CGM and have a lot more freedom since using the CGM Everyday Diabetes Care’ trial – a study which with remote monitoring – I love it,” Drina said. explored the effect of continuous glucose monitoring (CGM) with remote monitoring on Drina’s mum, Heidi, said the technology had psychosocial outcomes in parents of children been life-changing for the family. with type 1. “Since I can share the management of her The system works by transmitting blood blood glucose levels (BGL) with the school glucose readings every five minutes via nurse and coaches, it (CGM) has allowed me Bluetooth to a mobile phone or smartwatch. to pursue my professional career as I’m not It can also share readings with other devices hanging around the school or constantly on and send push notification alerts of highs the phone providing advice or ready to drop (hyperglycaemia) and lows (hypoglycaemia). everything to attend to Drina,” Heidi said.
Professor Tim Jones and Drina Bucktin Drina Bucktin
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“This study has demonstrated “It’s been great for my sanity, my own professional development and contribution to unequivocally that the use of CGM the family income.” with remote monitoring can improve NEW FOCUS ON TYPE 2 DIABETES the quality of life of families living with Heidi said Drina had taken on more of her own type 1 diabetes — parents sleep better, disease management knowing she had support family stress is reduced, and anxiety esearchers at the Children’s Diabetes Centre at the Telethon Kids from those around her, while her ‘nagging’ is reduced.” Institute have begun researching type 2 diabetes to tackle the rising mum could monitor from a distance. - Professor Tim Jones Rincidence of the disease among young people in Australia. The technology had particularly made an impact on Drina’s competitive sailing, which Professor Jones said it was important to note included representing Australia in a competition that at the time of the study, CGM was not in New Zealand recently. publicly funded in Australia and usage was low Type 2 diabetes (T2D) is a serious Professor Liz Davis, Co-Director of (CGM became fully subsidised for children in and costly disease with chronic the Children’s Diabetes Centre “We can monitor Drina’s BGL during a race April 2017). complications including accelerated and head of type 2 diabetes without the fear of her crashing dangerously development of heart, kidney and research, said the role of food low, and without dosing her with sugar to make “While many families who participated in the eye complications, as well as limb insecurity — the state of being without sure she doesn’t go low,” Heidi said. study could not have afforded to pay for it amputations. reliable access to a sufficient quantity of (approximately $5,000 annually), almost all of affordable, nutritious food — in childhood, “We can also share the Dexcom (CGM with the participants decided to continue once the In the past, the disease was usually only was another key research area as it had remote monitoring) with her coach so we don’t funding came through — this is telling,” he said. diagnosed in people as they got older but been shown to play a major role in the have to be on the water every time she trains or now, younger people, including children, development of chronic diseases in kids, races. “Before this subsidy, only 5 per cent of our are getting it. including obesity and T2D. patients used CGM but this has risen to 70 per cent. Our researchers have reported the “Previous research has shown that up to “We actually get a small part of our life incidence of T2D in children and one in five Australian children experience and sanity back while Drina gets to join “We’re putting our patients on CGM from adolescents in Western Australia and food insecurity,” she said. in with the other kids without mum or diagnosis now — we are about improving found Aboriginal and Torres Strait Islander dad hanging around all the time.” outcomes and reducing the disease burden children and adolescents aged under “In one of our research projects, we are - Drina’s mum Heidi and this technology is doing that.” 18 years have a more than 20 times seeking to determine the prevalence of greater risk of being diagnosed with T2D food insecurity in WA’s communities, and Professor Jones said results from this study were compared to those of non-Indigenous how it links to dietary quality, quality of life, influencing CGM usage globally. descent. degree of over-eating, and obesity. Children’s Diabetes Centre Co-Director Professor Tim Jones said this was the first CGM “We are a world-recognised centre for this Centre researcher Dr Aveni Haynes is “The primary outcome of this project will study to assess psychosocial outcomes as a type of research so what happens here will be currently working alongside investigators help to inform clinicians across WA of the primary outcome. published and disseminated internationally and in northern Australia to try and establish barriers faced by children and families it will add to the evidence for CGM use,” he the number of Aboriginal and Torres Strait who struggle with food insecurity and help “Parents of a child with type 1 diabetes live in said. Islander children, teenagers and young them devise individualised treatment plans constant fear that they will put their child to bed adults (less than 25 years) with T2D living around weight management, both to at night, but they won’t wake up in the morning He also predicted the technology would take across Northern Australia (WA’s Kimberley prevent T2D and manage the disease.” because their blood glucose levels have over from finger pricking – something families region, Northern Territory and Far North dropped to dangerously low levels overnight,” have until now had to perform on children six to Queensland). Professor Jones said. eight times a day.
“Some diabetes technologies have the This study was performed at the Children’s potential to make life more stressful so we Diabetes Centre, a JDRF/National Health and “By working out how many young wanted to find out if this technology might Medical Research Council-funded Centre of people there are with T2D, this can improve glucose levels and improve quality Research Excellence based at the Telethon Kids of life. Institute. be used to plan how to prevent more young people getting T2D in the future and how to provide health services to those who WHAT’S already have it; and to reduce NEXT their chances of getting other diabetes-related diseases and complications.” “We still need to learn who benefits the most from this technology, how we can make it - Professor Liz Davis acceptable so we have 100 per cent uptake and how we can get the data to be more easily interpretable for families so they can manage it themselves.” — Professor Tim Jones Professor Liz Davis
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FRIENDLY SCHOOLS GOES FROM STRENGTH TO STRENGTH
hat began as a small formative research project 20 years ago has grown into a universal bullying prevention and social skills Wdevelopment program which has helped countless Australian children and their families. Now the Friendly Schools project is evolving to meet new challenges.
Friendly Schools, led by Professor Donna Professor Cross said that as digital Cross and the Telethon Kids Health technology had evolved, so too had School students across Australia are benefiting from Professor Donna Cross’s Friendly Schools project Promotion and Education Research (HPER) Friendly Schools. Team, was first developed in 1999 after research revealed a clear need to help and “We’re increasingly working to meet the needs A review of 80 international studies support children who are bullied, as well as their of schools and parents in managing children’s indicated that families and teachers. safer use of digital technology, in ways that “When this project began in improve their development and learning 1999, we never envisaged that Focused on understanding bullying, developing opportunities, and reduce harmful outcomes, our work would have the impact % of young and evaluating school strategies to reduce all including cyber bullying,” Professor Cross said. it has had on school policy and 15 people forms of bullying, and informing national and practice and children’s social experienced international policy and practice, the program “With children using digital technology from development not only across cyber bullying is now spread across 14 large empirical trials. increasingly younger ages, urgent action is Australia, but internationally.” required to promote positive digital behaviours In 2005, significant interest from schools led to and to reduce potential risks of harm.” - Professor Donna Cross resources developed by the program being commercialised and disseminated, with training Professor Cross said that despite growing More than and support, to schools Australia-wide. It’s research investigating children’s use of “This is due to the important work being one quarter of students estimated more than 3,000 Australian schools technology and the internet, and the conducted by the Friendly Schools staff have used the resources to improve their school consequences of this increased engagement, here at Telethon Kids, without whose aged 8 to 14 passion, skills and willingness to build a policies and practices and the wellbeing of little research had been conducted with reported being bullied every their students. parents to determine their needs or effective better life for children, many of these ways of enabling them to guide their children’s results would not have been achieved.” few weeks or more often, The resources have also been taken up by digital behaviour. while % reported schools in the United States, Singapore and 9
New Zealand, with Scandinavia, “Likewise, many school staff lack bullying others every few weeks or more Canada and the United Kingdom the confidence and skills to teach Modecki, K.L et al (2014) investigating whether it would “With children using digital and foster safer digital technology transfer to their schools as well. technology from use by their students, and schools increasingly younger ages, have indicated they need support In their 20th year of Friendly in this regard,” she said. urgent action is Schools’s research, the research team are focusing on the required to promote However, she said if previous WHAT’S needs of sub-populations of positive digital behaviours results were anything to go by, NEXT more vulnerable children and and to reduce potential the Friendly Schools research young people. The increasing risks of harm.” would continue to make a positive prevalence of digital technology - Professor Donna Cross difference in the lives of children .This pipeline of research is continuing, led by The University of Western Australia and use by children is also shaping and their families for many years to Telethon Kids, with the aim of further developing and testing interventions to improve ongoing research efforts. come. social and emotional learning practice in schools.
Next steps will include the development of an app to deliver cyber safety advice and coaching to parents.
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Professor Carol Bower with some of LANDMARK FOLATE RESEARCH the original health promotion material developed to promote RECOGNISED AS MAJOR PUBLIC folate intake. HEALTH ACHIEVEMENT
he Public Health Association of Australia has rated mandatory folate fortification – which led to a dramatic decline in neural tube defects – as Tone of the top 10 public health achievements of the past two decades.
The move, announced in November 2018, 14.4 per cent national decline in neural honoured the paradigm-shifting work of tube defects (NTD) such as spina bifida Professors Carol Bower and Fiona Stanley, from 2011 to 2016, regardless of a mother’s who in 1989 made a landmark discovery culture, age, education or choice of hospital about the vital role of maternal dietary folate in system. early pregnancy in reducing the risk of neural tube defects such as spina bifida. “This drop in neural tube defects is seen across the country and is ‘spot on’ with our modelling Not content to establish the science – and for the level of fortification that has been determined to see that the whole WA introduced – so it is working as expected,” population could have access to adequate Professor Bower said. dietary supplementation – they followed their research up with decades of dedicated Importantly, she said fortification reduced campaigning and advocacy. neural tube defects in the Aboriginal population by 68 per cent, with rates dropping from 2.43 DATA KEY TO POLICY WIN Their efforts paid off, leading cases per 1,000 births between initially to a health promotion 2007 and 2009, to 0.82 cases campaign around the “That gap has now been per 1,000 births between 2011 importance of folate. It’s and 2016 – similar to that of A key tool in the push to achieve health promotion campaigns for voluntary closed between Aboriginal mandatory folate fortification came in maternal folic acid supplement use. estimated that about 4,000 and non-Aboriginal rates of the non-Aboriginal population. Australian children have been the form of data provided by the Western neural tube defects.” saved from debilitating and “In the Aboriginal population, Australian Register of Developmental The register continues to enable the deadly birth defects since - Professor Carol Bower health promotion to take folic Anomalies (WARDA) – originally ongoing monitoring of the impact health promotion efforts acid supplements before and established by Professors Carol Bower of mandatory fortification, as well as began in 1993. in early pregnancy had no and Fiona Stanley as the WA Congenital providing data for other kinds of research effect. However, with mandatory fortification, Malformations Registry in 1980. and serving as an important source of When data collection showed health the rate of neural tube defects has fallen to information for policymakers and health promotion wasn’t having the same impact that of the general population,” The first of its kind in Australia, the Registry service providers. in Aboriginal populations as in the wider Professor Bower said. was eventually merged with the WA Australian population, however, the researchers Cerebral Palsy Register to become “It was established as a general birth continued to push for changes in government “That gap has now been closed between WARDA, with the State Government defects register but the very first research policy to address the health needs of all Aboriginal and non-Aboriginal rates of neural making it compulsory to report project that we did with the data being prospective mothers and their babies in the tube defects. developmental anomalies. collected was a study of NTD and folate,” community. Professor Bower said. “One of the reasons for fortifying was that you WARDA – now seen as a national exemplar Partly in response to their continued advocacy, reach everybody regardless of pregnancy and one of the most complete registers “It has since been an important source of in 2009 Food Standards Australia New Zealand planning, and it’s equitable because of developmental anomalies in existence information for many, many other projects, introduced national mandatory fortification everybody gets additional folate if they eat – provided vital, high-quality data such as our work in the area of FASD, which of wheat flour for breadmaking. This change fortified products.” demonstrating that rates of NTD remained includes efforts to extend the age at which had a swift impact, resulting in a significant high in the Aboriginal population despite FASD can be notified to the register from six to 15 years of age.”
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UNIQUE CLINIKIDS A MARRIAGE OF RESEARCH AND PRACTICE
utism now accounts for 47 per cent of children on the National Disability Insurance Scheme, making it a key health priority for AAustralia. A unique new model developed by the Telethon Kids autism research team marries cutting-edge research with clinical practice to offer families innovative, evidence-based interventions designed to help kids reach their full potential.
Launched in January this year and CliniKids General Manager Gemma Upson in early childhood will reduce their level of disability. located at Telethon Kids’ former home said the new service aimed to address the Early intervention could be the difference, for example, on Roberts Road, Subiaco, CliniKids is a enormous gap between research findings between a child developing speech or remaining non- warm and modern clinic for children with in the field and their translation into clinical verbal. developmental delays and/or autism spectrum practice. One research paper has put the lag disorders. between research and practice at 12 years; The Institute’s autism research, led by Professor Andrew another a staggering 17 years. Whitehouse, is regarded as world-leading – however, Ms The model is an Australian first, not only Upson said advances had been limited by the absence providing families with diagnostic and clinical “That’s massive in a child’s life,” Ms Upson said. of a centre like CliniKids, dedicated to new diagnosis and psychology, occupational and speech therapy intervention methods in young children. services, but also giving them an important “Research is obviously conducted in a very opportunity to be part of novel research. controlled environment and sometimes that “It’s early days yet and we are busy building our programs can’t be easily translated into the messy real and data collection systems, however feedback from world we live in. families so far has been very positive,” Ms Upson said.
“The CliniKids model has the ability to innately Families felt reassured that services were provided in a feed clinical expertise into our research and judgement-free atmosphere, and in a modern, purpose- vice versa, so that we can trial interventions in a built clinic where everyone was treated with compassion. real-life setting and also evaluate the financial implications.” “Our families have the confidence too, that our interventions are backed by a skilled research team which uses highly evidence-based interventions,” she said. “Having interventions that are evidence based is very important but if the cost is prohibitive to families and service providers, it may not be widely accepted. The clinic is going to bridge that gap – trial the research in a real-life clinical setting, communicate that to the providers, and help educate the CliniKids is supported by community.” many donors including the Angela Wright Bennett - Gemma Upson Foundation, Rowley Foundation and the Australian Government. An estimated 2 per cent of Australian children have an autism diagnosis, and extensive research has shown that commencing therapy
24 | TELETHON KIDS INSTITUTE IMPACT REPORT 2019 | 25 TRANSLATION NEW FRIEND TO IMPROVE SOCIAL NATIONAL GUIDELINE PROVIDES ATTENTION OF KIDS WITH AUTISM UNIFORM APPROACH TO AUTISM DIAGNOSIS Children with Autism Spectrum Disorder be due to difficulties in visual attention sometimes find it difficult to look at that develop very early, within the first faces or understand what others few years of life,” she said. may be thinking or feeling. But an One of the most important policy attention-training game developed “The results from this research may changes ever implemented in the by researchers at the Telethon Kids indicate that games could be used to area of autism research and practice Institute is helping to improve social skill help aspects of social skill development came to fruition in October 2018, when development in school-aged kids with for children on the autism spectrum, the Autism CRC released A National autism. such as understanding faces.” Guideline for the Assessment and Diagnosis of Autism Spectrum Disorders Researchers, led by Dr Gail Alvares, in Australia. designed and evaluated an app- based game that rewarded children for Telethon Kids Autism Research Team selecting pictures of faces and ignoring Head Professor Andrew Whitehouse – pictures of objects, like trains or clocks. who is also Chief Research Officer of Using a machine called an eye-tracker, the Autism CRC – and Telethon Kids children were measured on how they autism researcher Dr Kiah Evans led the looked at faces and objects before and development of the Guideline, sitting on after playing the game. the executive committee responsible for the document. – both by people in Australia and After playing the game for 15 minutes, overseas – and is being used by major children more frequently looked at Dr Evans said the Guideline brought diagnostic services providers around pictures of faces first rather than objects, disparate state and territory assessment Australia,” Dr Evans said. and this was compared to a group of and diagnostic practices together into children who played a similar version of a coherent, streamlined benchmark In addition, an interdepartmental the game without being rewarded for practice, with the aim of providing working committee is meeting at selecting faces. consistency for people on the autism a Federal level to discuss wider spectrum nationally. implementation of the Guideline, and Although the research is still ongoing, two new research projects have kicked Dr Alvares said the results suggested “Since being launched in October off, examining clinicians’ uptake of the this kind of training early in a child’s life the Guideline has already been Guideline and its implementation in a may have the potential to improve their downloaded more than 9,500 times rural setting. social behaviours in later years.
“We believe that difficulties in social development for kids with autism may Dr Gail Alvares
Professor Andrew Whitehouse and Dr Kiah Evans
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CAMPAIGN PAYS OFF AS ALCOHOL LABELLING GETS GREEN LIGHT
ollowing strong evidence and lobbying by Telethon Kids Institute researchers, along with others including the Western Australian FGovernment, labels to warn women about the risks of drinking during pregnancy are to become mandatory on all alcohol sold in Australia and New Zealand within two years.
Leading Fetal Alcohol Spectrum Disorder Minister Roger Cook, agreed to introduce (FASD) researcher Professor Carol Bower, mandatory labelling at a meeting of the who was instrumental in presenting evidence Australian and New Zealand Ministerial Forum to support the decision, said mandatory on Food Regulation. labelling was part of multiple actions required to reduce birth defects caused by prenatal Food Standards Australia and New Zealand alcohol use. (FSANZ) are now developing consistent labels and standardised messages, with consumer “This is one important step in a suite of health testing and input from the researchers, industry promotion and public health approaches and public health organisations. These are because this is a product that actually causes expected to be ready by the end of 2019. birth defects,” she said. “Women ought to be given that information and there is no more “This is a major win for clarity – every alcohol immediate place than on the product.” product will have the same message on the bottle and packaging, with specifications to In early 2018, the Food Regulation Standards the size, colour and wording so there will be Committee invited Professor Bower consistency,” Professor Bower said. to make a submission as a public health stakeholder to the targeted Following a ‘wash-in’ period of 12 consultation regarding policy options “This is a major win for months to allow time for existing for pregnancy warning labels on clarity – every alcohol alcohol product to leave the packaged alcoholic beverages. product will have shelves and industry to work to get the new labels on, it is expected the same message Professor Bower, along with Dr that all alcohol will carry the new Roslyn Giglia and Dr Martyn Symons, on the bottle and labelling by 2020. made the submission on behalf of packaging, with the Institute and the FASD Research specifications to “Once in place, the mandatory Australia Centre of Research the size, colour and labelling needs to be evaluated to Excellence, of which Professor Bower wording so there will determine if women are seeing the is Director. Their review found a be consistency.” labels and clearly understanding five-year trial of voluntary labelling why not drinking alcohol in - Professor Carol Bower since 2011 had been unsuccessful, pregnancy is the safest option,” with testing revealing that labels Professor Bower said. were hard to read and had unclear messages that could be easily misinterpreted to “We are concerned to ensure there is good mean it was okay to consume alcohol during evidence supporting what the message is and pregnancy. then to find out how well it has been seen and taken note of.” In October 2018, health ministers around Australia, with strong support from WA Health
Professor Carol Bower
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The research also found considerable language diversity, with less than a third of the BANKSIA HILL PROJECT’S young people assessed speaking Standard Australian English as a first language.
RIPPLE EFFECT Ms Kippin said these communication barriers meant many young people were going through highly verbal legal and rehabilitation ighteen months on from the publication of its findings inBMJ Open, the processes at a significant disadvantage. game-changing Banksia Hill Project is continuing to reshape the way The findings have led to interest in the authorities manage and support vulnerable young people within the provision of intermediaries to help respond to E language and communication needs when justice system. young people are engaging with police and the courts.
The two-year study, which was the first in The training resources developed, Hayley Passmore and Natalie Kippin Australia to assess and diagnose young delivered and evaluated by Ms Passmore people in a youth custodial setting for were a key outcome of the Banksia Hill Fetal Alcohol Spectrum Disorder (FASD), Project, and are now in hot demand. revealed that more than one third of young people assessed by the team had FASD – the The Department of Justice has commissioned WHAT’S highest known prevalence in a justice setting further paid training sessions for staff including NEXT worldwide. newly recruited youth custodial officers and community youth justice officers, and other The team, led by Professor Carol Bower, sectors, including police, child protection Professor Bower and team are now advocating for further collaborations with also found 89 per cent of the young people and education, are also keen to receive government, community and service providers to better respond to the needs examined had at least one form of severe the training. In addition, Ms Passmore has of young people in the justice system. This includes strengthening health and neurodevelopmental impairment – providing received requests to access the resources from neurodevelopmental assessments, evaluating rehabilitation programs, training the evidence that youth with neurodisability are researchers, service providers and agencies justice workforce, and reducing the over-representation of Aboriginal people in grossly over-represented in youth detention in worldwide. custody. WA. .Ms Passmore and members from the Telethon Kids leadership team are meeting The results are still rippling through government with the heads of seven WA State Government departments, to discuss a “These requests are increasing rapidly departments, police, custodial authorities, and cross-government approach to upskilling frontline professionals in the justice, the Children’s Court, and have led not only to given the global interest in FASD police, health, education and child protection sectors, to better manage changes in policy and practice, but increased and justice-involved youth. I’m now neurodevelopmental impairments. community understanding of FASD and seeking funding to evaluate the widespread interest in Australia and overseas effectiveness of the training with other The team will host a WA Youth Justice and Health Forum in November, to discuss workforces, and to develop a ‘train the the intersection between the justice, health and education sectors and collate “The delivery of training resources, pioneered trainer’ model to ensure the training priorities from community, service providers, researchers and government. by Hayley Passmore, to more than 100 remains sustainable.” Banksia Hill custodial staff means they are now better equipped to be able to recognise - Hayley Passmore and work effectively with young people with neurodevelopmental impairment,” Professor Bower said. The Children’s Court is also changing the way it responds to young people coming before it, thanks to the study’s findings. Judicial officers “Here in WA the findings, and the have relied on assessment reports prepared continuing advocacy and analysis by by the team to better understand mitigating team members, have changed the factors for sentencing; and there’s growing way the justice workforce engages recognition of the language and other barriers with these young people.” faced by many young people as they try to navigate the justice system. - Professor Carol Bower Follow-on research led by Banksia Hill Project team member and speech pathologist Natalie “We’re also seeing moves to improve the way Kippin revealed significant levels of language police and the Children’s Court interact with difficulty among young detainees, with almost young people with a communication disorder half meeting the criteria for language disorder. or a different language who come into the Much of that language disorder was associated Members of the Banksia Hill Project team justice system – another important finding.” with FASD.
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ALCOHOL SCREENING TOOL TRANSFORMING MATERNITY PRACTICE
screening tool to help midwives and other health professionals contribute to the prevention of Fetal Alcohol Spectrum Disorder A(FASD) is changing maternity practice across WA public hospitals and expanding knowledge about the risks of drinking alcohol in pregnancy. Behind the scenes of filming for new resources aimed at helping GPs use the AUDIT-C screening tool.
“If a child comes in at age seven with “It’s three routine questions doctors can ask developmental issues, for example, doctors during their consultations with women to will be able to refer to records to establish if promote a healthy pregnancy, that we hope Alcohol risk screening and preventive In July 2018, it became mandatory to AUDIT-C was applied and then assess any will become part of their normal interaction education are now being embedded into record alcohol risk into the WA Health history of alcohol use for its relevance in with all pregnant woman,” Ms Jones said. routine maternity care after the validated Midwives Notification Form completed diagnosis,” Associate Professor Reibel said. AUDIT-C (Alcohol Use Disorders Identification for every birth in Western Australia. To help She said such conversations could be Test – Consumption) and associated Learning with the change, WA Health provided open Heather Jones, senior manager of FASD challenging but needed to be embraced, Guide were rolled out across WA Health. access to the AUDIT-C Learning Guide to all projects at the FASD Research Australia Centre both by midwives and medical practitioners, health professionals likely to care for pregnant for Research Excellence (FASD CRE), said for the best outcomes for both mothers and The AUDIT-C project, funded by the WA women, including nurses, general practitioners, another key outcome of the AUDIT-C project their babies. Department of Health and led by Associate obstetricians and Aboriginal health workers. was a move to add information Professor Tracy Reibel during her time as a gathered as part of alcohol risk “With women who have high senior research fellow at the Institute, comprises “By asking women about alcohol, health screening to state and national alcohol use it becomes quite a three questions that score a woman’s alcohol professionals can then advise why the data bases. “It’s about not scaring careful conversation – they need to intake in pregnancy, with the total score Australian guidelines recommend they should them but advising be cognisant about why they might indicating either low, medium or not drink alcohol during “Thanks to successful advocacy them that the best be drinking,” Ms Jones said. high risk for both herself and for pregnancy,” Associate by FASD CRE co-directors, way forward now her baby. “We know women want Professor Reibel said. Professors Carol Bower and they know they are “Alcohol might be being used to to be told why we are Elizabeth Elliott, along with pregnant is to try and self-medicate for a whole range of Midwives had reported in a recommending that they don’t “We know women want others, to establish national reasons related to mental health previous study that they were to be told why we are stop drinking, and the drink. By advising them based mandatory reporting of alcohol issues or domestic violence. If they concerned about their capacity recommending that they reasons why.” on the best evidence, referred use in pregnancy in each state want to stop drinking but can’t, they to effectively ask women about don’t drink. By advising them - Heather Jones to in the Learning Guide, we and territory, data collected via can be referred on to appropriate their alcohol use in pregnancy, based on the best evidence, the Midwives Notification Form services for help.” hope to reduce the rates of thus hampering their ability to referred to in the Learning will now contribute to the WA provide advice and support. women drinking in pregnancy Guide, we hope to reduce Health Perinatal Data Base and Australian She said women who were assessed as low The Learning Guide was and therefore bring down the rates of women drinking Institute of Health and Welfare’s National or medium risk commonly raised concerns then developed to improve the rates of FASD.” in pregnancy and therefore Perinatal Data Collection,” Ms Jones said. about damage from drinking and binge knowledge, understanding and bring down the rates of FASD.” - Associate Professor Tracy Reibel episodes before realising they were pregnant, effective use of the AUDIT-C “This not only adds strength to ongoing sometimes even asking if they should consider screening tool. Associate Professor Reibel said making alcohol risk screening advocacy work, but enables researchers abortion. and policymakers to monitor the success of Midwives who participated in an evaluation standard for all pregnant women removed the risk that women may feel stigmatised and interventions and campaigns.” “It’s about not scaring them but advising them of the Learning Guide indicated it provided that the best way forward now they know they them with the skills to confidently and routinely singled out in being asked about their alcohol use. Although already available to all health are pregnant is to try and stop drinking, and use AUDIT-C in a non-judgemental way with all professionals, the resources in the AUDIT-C the reasons why.” pregnant women, and offer brief interventions Pregnancy medical records incorporating this Learning Guide are now being specifically as required. A companion survey of pregnant updated for general practitioners. This project, Ms Jones said broader use of AUDIT-C and its women showed that routine questions about information also provided valuable information for retrospective reference, in future cases funded by the Western Australian Primary resources would also improve understanding alcohol use were positively accepted, Health Alliance, will produce three short of FASD among health professionals, including prompting them to ask more about the impact where a child’s developmental problems were being investigated. videos adapting the message to prompt those who were trained overseas and less of alcohol on their baby’s development. doctors to ask, assess and advise women aware of the Australian drinking culture. using AUDIT-C.
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WHAT’S NEXT ATLAS MAPS A PATHWAY TO
2019 - AUDIT-C Learning package and resources available for use by general practitioners. HAPPY, HEALTHY CHILDHOOD
2019 - Evaluation of the use of the AUDIT-C and Learning guide by midwives across WA maternity services. Collaboration is at the heart of everything CoLab does – after all, it’s the grounding of its name.
It’s no wonder, then, that the Child Development What is it? Atlas is proving popular even before its official launch – because it brings together government services The AUDIT- C (Alcohol Use Disorders Identification Test – Consumption) is a with community, practitioners and researchers. And validated, three-item, pregnancy-specific standardised method for assessing it’s doing so to build a brighter future for Western how much and how often a pregnant woman is drinking alcohol. Australian children.
Initially conceived by the Telethon Kids Institute’s Work to date Developmental Pathways and Social Policy team .2014/15 - Alcohol and Pregnancy and FASD: Midwives’ Knowledge, Attitudes and supported by CoLab to bring it to fruition, the and Practice project, led by Dr Jan Payne, funded by Healthway. Child Development Atlas is an online, interactive tool that maps data on indicators of learning, wellbeing, 2016/17 – The Midwives and Women AUDIT-C Intervention project, led by social, and developmental outcomes for children Associate Professor Tracy Reibel, funded by WA Department of Health. and families.
Piloted with a select group of stakeholders including policymakers, practitioners, researchers and About FASD community members, the Atlas uses government Fetal Alcohol Spectrum Disorder (FASD) is characterised by severe neurodevelopmental data to map indicators of child development that can help provide insights into the associations impairment resulting from an unborn child’s exposure to alcohol during pregnancy. between neighbourhood-level factors and children’s The effects of prenatal alcohol exposure are lifelong and may not be seen at birth. outcomes. Problems include brain damage leading to delayed development, social, behavioural and learning problems. These can lead to secondary outcomes such as poor school Developmental Pathways and Social Policy co-head Dr Rebecca Glauert said the Child Development performance, unemployment, substance abuse, mental health problems and early Atlas, which has recently finished the testing phase, engagement with the justice system. FASD can be found in all parts of our society and had been piloted by representatives from state and impacts the individual, their family and the whole community. local government, research institutes, community services and consumers.
What are the “We’ve included a broad range of indicators in recommendations for the Atlas, selected to reflect what is important to alcohol in pregnancy? governments, service providers, and researchers, as well as the broader community,” Dr Glauert said. The placenta cannot keep harmful substances such “While most of these are health- and social-related, Dr Rebecca Glauert as alcohol away from the with some early education indicators, we’ll be fetus. The National Health continually refining this list to increase the range of information available in the Atlas.” and Medical Research Council of Australia advises CoLab Co-Director of policy, Mr David Ansell, women who are planning said the ground-breaking platform would allow a pregnancy, who are communities to better tailor programs and services to improve the wellbeing of children. pregnant, or who are The Child Development Atlas has been breastfeeding, that ‘no “The pilot of the Child Development Atlas has been developed in partnership with alcohol is the safest option’. warmly received by service providers,” Mr Ansell Western Australian Government agencies said. “They believe it will make a real difference to with funding assistance provided their ability to support families as they navigate the by the Minderoo Foundation and challenges of early childhood.” Ian Potter Foundation.
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NEW DRUG THERAPY PROVIDES HOPE FOR KIDS WITH CYSTIC FIBROSIS
he family of two girls with cystic fibrosis are hopeful after Telethon Kids Institute spin-off company, Respirion, received $20 million in funding to Tdevelop a promising new therapy.
The Donaldson family at the Respirion launch Christine Donaldson remembers vividly “We know that if infections are left the moment her third child, Isobel, was untreated there is the possibility of diagnosed with cystic fibrosis (CF). permanent lung damage,” Christine said. Now, thanks to a $20 million investment from “At that stage, there will be opportunities to the Medical Research Commercialisation further explore the potential of this formulation Isobel, born three weeks early, had been “You’re always wondering what’s going on Fund’s Biomedical Translation Fund (MRCF for use against other micro-organisms failing to gain weight and after a series of tests, under the skin. They look so healthy on the BTF), and $4 million from the US Cystic Fibrosis (including fungae and TB), with different doctors told Christine and husband Gerard that outside. Any cough I hear them do, in the back Foundation, Respirion will take the therapy into antibiotics, and for treating other diseases she had CF, a genetic condition that causes of my head, I’m wondering where that’s going larger clinical studies, in the hope it will one such as non-CF bronchiectasis,” Dr Clements persistent lung infections and progressive lung and what damage it’s causing.” day soon be available to patients. said. damage. Now, a new therapy being developed by Dr Clements said the ultimate aim was to Christine was thrilled at the news, saying the “I was devastated,” Christine said. “When Telethon Kids spin-off company Respirion could reduce infections, reduce hospitalisations, and prospect of increased lung function was you’re pregnant with your child, you have this provide new hope for kids like Isobel and Ruby. improve the quality of life and life expectancy fantastic. idea of how great their life will be, and when in these patients. you’re given this CF diagnosis, The treatment – a chemical “That’s going to give our girls longevity and there’s such an incredible added to an inhaled antibiotic Although further testing and statutory hopefully keep them out of hospital so they grieving process that their life therapy – is the brainchild of approval are required, if the results continue can just enjoy being kids,” she said. might be hard, or their life might “You’re always wondering leading Australian pulmonary to be positive the formulation could be ready be limited.” what’s going on under the skin. specialist, and Respirion for clinical use in as little as four years. They look so healthy on the Founder and Director, Dr Barry Two years after Isobel was born, outside. Any cough I hear them Clements. the Donaldsons welcomed do, in the back of my head, their fourth child and second I’m wondering where that’s “Persistent lung infections and daughter, Ruby. Soon after, they going and what damage it’s the inevitable decline in lung WHAT’S received the devastating news causing.” function remain urgent unmet that Ruby also had CF. needs in cystic fibrosis,” Dr - Christine Donaldson NEXT Clements said. “In the early days it was me coming to term with the “In my 35 years treating cystic The formulation will undergo diagnoses emotionally because the girls were fibrosis, I’ve become increasingly frustrated further clinical trials over the next relatively healthy,” Christine said. with the limited effectiveness of antibiotics in 12-24 months to establish safety treating lung infections. and stability sufficient to obtain CF causes the lungs to produce abnormally regulatory approval for clinical use in thick and sticky mucus, trapping bacteria and “With no new antibiotics on the horizon, I found humans. leading to recurrent infections which can cause this chemical that weakened the defences of permanent damage and result in lung failure. resistant bacteria in the laboratory. Pending that approval, the definitive multi-centre Phase 3 efficacy study Since birth, Isobel and Ruby have received “I took this chemical and combined it with an will be performed and if the results Telethon Kids Clinical Trials Coordinator Sam Grogan (L), with constant medical treatment and physiotherapy antibiotic (tobramycin) and found it increased prove positive, the formulation will sisters Ruby and Isobel, who have CF, and paediatrician Dr to keep their lungs healthy, but antibiotic the killing power of the antibiotic on these Barry Clements resistance means they are desperately in resistant germs, but also improved the patient’s then be ready for use in the clinic. need of new treatments to fight off constant overall lung function.” infections.
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Currently with developers to implement the “It could be accessed privately – a lot of changes and adapt it for delivery on a mobile young people are not able to come out to device, the game is expected to be ready family, friends or health professionals, so this GAME AIMS TO ALLEVIATE soon for a pilot study to test its acceptability is a way they can access some assistance with a small group of trans and gender diverse without feeling like they need to be ‘outed’ young people. A notebook attached to along the way,” Dr Perry said. DEPRESSION FOR TRANS YOUTH the game provides guidance and links to a newly developed resource with advice about dealing with gender dysphoria, which was requested by consultation groups. digital game adapted by Telethon Kids Institute researchers is set to deliver engaging, accessible help to prevent depression for trans and Dr Perry said if licensed for national use in the future, the game could be accessed gender diverse young people. online by all trans and gender diverse young Dr Yael Perry is supported by A people, or by referral through services such The Giorgetta Charity Fund. as headspace or community-based queer spaces.
With disproportionately high rates of it back to real-life difficulties they have Mental health of trans and mental health problems in this group experienced. WHAT’S gender diverse young people of young people and cost, stigma and privacy concerns affecting their access “The aim of the game is to restore balance NEXT to appropriate services, youth mental health in this fantasy world that has been overrun Almost one in two have researcher Dr Yael Perry and her team have by ‘GNATS’ (gloomy negative automatic Pilot study in WA with 10- attempted suicide developed a digital solution to help overcome thoughts),” Dr Perry said. 12 young people to test Three in every four have the barriers. acceptability and feasibility. “As this is an evidence-based intervention, experienced depression or “Digital health interventions are widely we are starting from a pretty good point from .Seeking funding for a national anxiety accessible, delivered with high fidelity, private, which to adapt and enhance the game to mobile trial with 150-200 young 60 per cent felt isolated from low cost and can be widely make it much more acceptable people, to test effectiveness health and medical services disseminated,” Dr Perry said. for this population, which means of the intervention on a large they are more likely to use it.” 42 per cent reported service “A lot of young people scale. If successful, this would “For this particular population, there help secure an Australian providers did not understand or are not able to come out is very little that has been done The young people consulted licence for the game, allowing respect their gender diversity around mental health, so we are to family, friends or health about the game suggested it to be offered to all trans and keen to fill that void.” professionals so this is a tweaks including non-binary gender diverse young people. Source: Trans Pathways report, Telethon Kids way they can access some avatars, and changes to Institute, 2017 In a Healthway-funded project, the assistance without feeling language and some scenarios to team consulted trans and gender like they need to be ‘outed’ more closely reflect themselves diverse young people aged 11 to along the way.” and their experiences. 18 years to seek their feedback - Dr Yael Perry about the use of online health “We have increased the interventions and the established customisation so people really digital game, SPARX, to help feel the avatar is reflecting prevent depression. them and changed some of the language to incorporate gender neutral pronouns,” Dr Perry SPARX, a therapeutic game designed by said. University of Auckland researchers, has been evaluated as equivalent to face-to-face “They want trans-specific scenarios but not therapy in treating depression in young people exclusively – like all young people, many aged 11 to 19. It has also been widely and general scenarios apply to them. successfully adapted for use by same sex- attracted young people and for different “We’ve changed one scenario to depict them cultural groups. being misgendered by a parent or friend using the wrong pronoun. It teaches them ways to Using a fantasy game format, users – provide feedback about how it makes them represented by a personal avatar – progress feel when the wrong pronoun is used and doing through seven levels, each level presenting that in an assertive rather than aggressive way. different scenarios and targeting different cognitive behavioural skills. At the end of each “The game uses the same format and cognitive level users have the opportunity to reflect on behavioural principles, just changing the the new skills they have learned and to relate context.” Dr Yael Perry and Dr Ashleigh Lin
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The Home HELPING HAND ON HOME STRETCH Stretch campaign TO ADULTHOOD
http://thehomestretch.org.au elethon Kids Institute data linkage research confirming young people who have experienced out-of-home care face serious disadvantage has bolstered a national push to extend formal support to the age of 21, and prompted a A national advocacy campaign by T a group of concerned organisations trial of the concept in WA which could lead to permanent policy change. seeking for all state and territory governments to give young people in out-of-home care systems the option to remain in care until the age of 21, to provide them with more support for a better start in life. Telethon Kids Institute researcher Dr the Department of Communities would Melissa O’Donnell is only too familiar with support a pilot program of extended care, the problems that can befall some of the to be rolled out in coming months. Dr Melissa O’Donnell most vulnerable people in our society. Dr O’Donnell, who is on Home Stretch’s WA Named Woodside Early Career Scientist of the committee, was part of the multi-agency Year at the 2018 Premier’s Science Awards for expert group charged with developing the they like until aged 21, or to transition in and “We are hoping a lot of the work we are her internationally recognised work in the area pilot program. She is advising the evaluation out of care as they feel able. doing looking at the transition support of child abuse and neglect, she has spent more component of the pilot and, pending any being offered will provide information and than 10 years investigating the factors behind modifications, hopes to see the program Alternatively, a transition support worker will evidence for other places that want to child maltreatment and what happens to those implemented for all young people transitioning help them find accommodation and guide implement pilots as well.” who experience it. from care within 12 months. their education and work options until they are 21. Now, her research into outcomes for children “This is really exciting for us,” Dr O’Donnell said. taken into the child protection system is “We’ve really been pushing as part of the Home helping to challenge a long-standing policy – Stretch campaign that we need to increase the WHAT’S replicated in every state of Australia – which has leaving care age to 21 years. “They have suffered so much traditionally seen young people turned out of trauma in their lives, we are hoping NEXT care and largely left to fend for themselves the “The outcomes for these young people are to give them a better chance moment they turn 18. particularly bad and we needed to look at how for better educational, work and In a related project called we can provide transition support for them to Early last year, a data linkage study ensure they are not just cut off at 18 years of mental health outcomes.” Navigating through life, Dr undertaken by Dr O’Donnell, Fernando Lima age. - Dr Melissa O’Donnell O’Donnell’s team will again join and Dr Miriam Maclean – from the Institute’s up with the WA Department Developmental Pathways and Social Policy of Communities to track the team – demonstrated that young people who “At 18, many young people are outcomes of young people have been in care fared much worse in terms still at high school, so it causes “Our research has shown that many of those leaving care from age 16 of their mental health, education, health, and particular challenges when told on young people will have mental health issues, through to the age of 23, by interaction with the juvenile justice system than their 18th birthday that their care so we need to ensure they have a mental using linked data, interviews and those of a similar socioeconomic status in the has finished, and they need to find health plan in place to support their mental surveys every six months. general population. their own accommodation and health needs.” be independent.” The results lent strength to Home Stretch, a Advocacy for change has continued national campaign which has urged all states - Dr Melissa O’Donnell nationally, with Victoria also announcing a to change legislation to support young people trial extending the foster care leaving age, in care until the age of 21 so as to help them and South Australia agreeing in principle. transition properly into adulthood; and were “For these young people who have had immediately requested by the WA Office of the “We are definitely trying to put pressure on significant trauma in their lives, it is really tricky to Auditor General as evidence assisting its inquiry the other states now to match what has navigate independence.” into young people leaving care. been done in Victoria and Western Australia in terms of extending the leaving care age The pilot program will support young people to By October last year, WA Child Protection and to do their own pilots,” Dr O’Donnell stay in a current foster care arrangement that Minister Simone McGurk had announced that said.
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THROWN IN THE DEEP END, OUR PROJECT JESSICA GOES IT ALONE IN DETAIL Jessica’s young life Now at TAFE studying community has been touched by “At 18 many young services and youth work, Jessica domestic violence, people still need hopes to start a degree in law, The Telethon Kids Institute, through the sexual assault, criminology and justice next year a lot of guidance Developmental Pathways and Social Policy addiction and hospital and has also applied for entry team, was commissioned and funded by the psychiatric admissions. At and don’t have to the Police Academy. She’s Department for Child Protection and Family 14, home became a series of family to go to.” motivated to effect change. Support to investigate outcomes for children who short-stay foster homes, groups - Jessica had left out-of-home care, up until 23 years of age. homes, respite care and hostels. “It took a lot for me to get to The project used linked data from government Now aged 18, she is living where I am now,” she said. “I just agencies, including the WA Departments of independently, juggling study and part- want to see other people able to change Health, Education, Corrective Services, and time work to meet rent and pay the bills. their lives around and get on the right Communities. Service contacts and outcomes, pathway. They will then be able to help such as educational attainment, were compared It’s been tough. That she has graduated others who have been in their situation. with a similar group of WA children who had from Year 12 and come this far, she contact with the Department for Child Protection attributes to the support of a good case “With domestic violence, sexual assault and Family Support but had not been in care, and worker who helped her through the – the world at the moment is influencing a control group of similar children who had no turbulent years following her removal the younger generation and soon it is not contact with the Department. into care. going to be a pretty country.
However, at 18 she finds “Only a very small she has been cut off from percentage of young “It took a lot for me to that important guidance people succeed in life and source of advice get to where I am now. after being in care. If we about eligible supports and I just want to see other put more support in place allowances. people able to change and make sure everything Our data and the Auditor General’s 2018-19 Young People their lives around is running smoothly, that Leaving Care report highlighted poor outcomes for young “At 18 many young people still and get on the right percentage will go up so need a lot of guidance and pathway. They will then much. Then, rather than people leaving foster care at 18 including: don’t have family to go to,” be able to help others having young people going Jessica said. “If they’ve had a who have been in their to prison, suiciding or getting case manager for a long time themselves all wrapped up in situation.” and have built that respect ‘stuff’, they will actually get and bond with them and their - Jessica a qualification and do good % Only % support is gone – it can be like things.” 82 54 repeating what happened in had not % were not your home life. completed a 4 doing “You sort of get thrown in the deep end high school were likely to training and have to learn for yourself. It can certificate attend university or work be lonely and if you don’t know how to budget, things are not going to go so well.”
She said extending care to 21 years, as % % % proposed, would provide ideal backup 27 20 38 while young people found their feet, had a had a had a allowing them to step back support as and mental juvenile detention juvenile and/or when they felt ready.
health and/or adult adult community- “The new program will be really contact imprisonment based sentence beneficial,” she said.
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This research changes the very way we think PARADIGM SHIFT
Respiratory Medicine, Dr Larcombe said there was a clear need for more research to establish the true impacts of e-cigarettes RAPID RESPONSE TO – particularly on pregnant women, babies and children who may be exposed to the aerosol produced by the devices. Apart E-CIGARETTE FINDINGS from the impacts of ‘vaping’, there had also been instances of young children dying from drinking e-liquids. elethon Kids Institute-led research revealing that six out of 10 ‘nicotine- free’ e-cigarette liquids contained nicotine and other potentially harmful “There is this perception that chemicals received extensive media coverage and produced a rapid e-cigarettes are safe to use during T pregnancy, and it’s completely response from the Federal Government. unsubstantiated and almost certainly Dr Alexander Larcombe untrue because women and their unborn babies are still getting exposed to nicotine and other decisions about what they’re consuming,” Dr Just a day after the findings were A team led by Associate Professor Larcombe said. potentially harmful chemicals,” published in a research letter to the Alexander Larcombe, Head of Respiratory - Dr Alexander Larcombe Medical Journal of Australia in January, and Environmental Health at Telethon “There’s a lot of uncertainty out there – people the Therapeutic Goods Administration Kids and part of the School of Public Health think they know what they’re breathing in or (TGA) issued a media release warning at Curtin University, bought 10 e-liquids on- that it’s completely benign and is just water We know that nicotine can cross the placental consumers about the potential risks of line and over the counter from Australian vapour. Maybe a few of those people now barrier, and we know that nicotine impacts purchasing electronic cigarette liquids. suppliers and had an independent commercial realise that it’s not.” laboratory test them. brain development and affects the behaviour, memory and learning of a child, as well as The release quoted the research’s findings that Although based on a small sample, the lung growth and development. undisclosed and potentially harmful ingredients All 10 had been labelled ‘nicotine-free’. Six research revealed similar findings to an early had been found in e-cigarette liquids being samples were found to have trace levels or NSW-based study, and received national and “So, if a pregnant woman is thinking of sold in Australia – including nicotine and an low doses of nicotine in them, while all 10 international media coverage – highlighting switching to e-cigarettes instead of smoking, acutely toxic chemical typically found in were found to contain 2-chlorophenol – a the intense interest in a subject which which the literature shows a lot of women are, pesticides and disinfectants. chemical used in insecticides, herbicides and continues to divide consumers, policymakers the outcomes might be just as bad. We just disinfectants and which is known to irritate and health groups. It is illegal in Australia to sell e-liquids containing human airways and skin. don’t know. nicotine, which is classed as a Schedule 7 The TGA response noted that the evidence “We really don’t know the answers to a lot of Dangerous Poison under the Poisons Standard The analyses also revealed by-products of for e-cigarettes as an option to quit smoking the questions that people are asking about (with specific exemptions such as some nicotine animal or human bodily functions, suggesting remained mixed, and that there were e-cigarettes. What is needed now is a lot more replacement therapies and tobacco for the manufacturing process had been concerns that significant use of nicotine- research.” smoking). contaminated by mammalian blood, urine or containing e-cigarettes by adolescents faeces. could be a gateway to longer-term cigarette Dr Larcombe’s research has been supported smoking. Dr Larcombe said the findings suggested by funding from the Australian Competition and Consumer Commission, Health consumers were purchasing e-liquids without “At this time, no electronic cigarettes have Department of Western Australia and the really knowing what was in them, highlighting been approved in Australia as a therapeutic National Health and Medical Research the lack of regulation around the labelling good for smoking cessation. Since the TGA Council. The research published in the MJA and manufacture of e-cigarette products in does not regulate these products, their quality was a collaboration between Telethon Kids, Australia. and safety is not known,” the statement said. Curtin University and The University of Western Australia. In a position echoed in a viewpoint article he was recently invited to write for The Lancet “We went into this not knowing what we would find and many of the findings were a bit surprising,” Dr Larcombe and his team are analysing the results from further - Dr Alexander Larcombe WHAT’S e-cigarette research, including some investigating the relative impact on mouse lung function of e-cigarettes compared to regular cigarette NEXT smoking, versus giving up altogether; and other tests investigating the impact of e-cigarette smoking on pregnant mice and their offspring. “What they did show is that there’s no way people can tell what’s in these products .Dr Larcombe is part of a Thoracic Society of Australia and New Zealand based on what the label says. We wanted to working party which is currently working on a position statement on raise awareness, to get people thinking about e-cigarettes. it more so they can make more informed
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LET THE SUN SHINE IN
or decades Australians have been told to minimise sun exposure to prevent skin cancer, however researchers at Telethon Kids Institute Fhave challenged that message, based on multi-pronged research that shows some sun exposure may hold important health benefits.
Head of the Institute’s Inflammation vitamin D supplementation, given in the Team, Professor Prue Hart, said the form of drops to babies from birth to six results from three significant research months of age, was no match for direct streams at the Institute have made it sunlight. increasingly apparent that some exposure to direct sunlight is important for good health – The research, which studied 195 infants, found and not just because it produces vitamin D. higher rates of eczema in babies who had less UV light via sun exposure in the first three In what she described as the ‘next big wave months of life than babies who had greater of knowledge,’ Professor Hart said research sunlight exposure. led by herself, Dr Shelley Gorman and Dr Debbie Palmer pointed “Our findings indicate that to multiple beneficial molecules sunlight exposure appears to be “...we think Australian being created on the skin by more beneficial than vitamin D exposure to direct sunlight. authorities may have supplementation as an allergy been too strict with the prevention strategy early in life,” “Our combined work stretches ‘sun safe’ messages, Dr Palmer said. across autoimmune, metabolic and as a result people disease and skin allergies, and aren’t getting enough “This suggests vitamin D carries the common thread exposure because of supplementation alone isn’t that there are some beneficial the fear of skin cancer.” the answer, and that there are effects of sunlight, not all of it other elements at play that can - Professor Prue Hart vitamin D-related,” Professor Hart only be obtained from direct UV said. “There are other important exposure.” mediators that need to be considered and researched. She concluded that further research was needed to explore the bioactive molecules “Based on this, we think Australian authorities involved. More investigation was also needed may have been too strict with the ‘sun safe’ to understand and recommend safe levels of messages, and as a result people aren’t sun exposure so policymakers could develop getting enough exposure because of the fear healthy guidelines. of skin cancer.” Professor Hart said Dr Palmer’s finding The most recent work in the field is from the that it was sunlight, rather than vitamin D Childhood Allergy and Immunology Research supplementation, which produced positive Team, led by Dr Palmer which, for the first results had been a surprise. time, demonstrated an association between greater direct UV light exposure for babies “It was very much unexpected but it’s really in the first three months of life, and lower reinforcing this idea that the beneficial effect incidence of eczema. of some sun is so multi-pronged,” Professor Hart said. “Yes, some people may get skin Intended as a study to gauge the benefits cancers but there are all these other benefits of vitamin D supplementation in warding and there are now three different areas of off eczema in babies born to allergy-prone research showing this benefit. families, the research found instead that Professor Prue Hart and Dr Shelley Gorman
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“Debbie’s research provides yet another piece specific sun exposure guidelines, particularly for of strong evidence supporting the need for the people at risk of autoimmune disease, metabolic SUNNY OUTLOOK FOR ALLERGY-PRONE BUB good parts of sun exposure, and reinforces that disease and type 2 diabetes, and pregnant you can’t fight this message that sun is good for women and babies. you by simply telling people There’s a history of asthma and eczema part, with 97 receiving vitamin D supplements to take vitamin D out of a “We do need to work with on both Emma Snelgar and her husband’s and 98 a placebo. bottle.” the people who develop “Australia should be the capital of side of the family, so it’s not surprising that health policy, like the where this research is undertaken; she chose for her son Felix to be part of Felix was also one of a number of Building on 20 years spent Cancer Council, and we’re a country that gets more sun Dr Debbie Palmer’s research into sunlight participants across both groups to wear a investigating the impact they need evidence,” Dr than anywhere else and it’s really exposure, vitamin D and eczema. UV dosimeter clip, designed to gauge his of ultraviolet radiation on Gorman said. exposure to sunlight. Emma said this mostly health, Professor Hart has about finding where that balance is in Like her husband, Emma’s first son Ollie, now occurred during the safer, low UV periods of recently finished human the message we give people about Professor Hart said the aged five, suffered the painful skin allergy, the day – either early in the morning or late trials delivering narrow band safe sun exposure.” results of the combined with an additional egg allergy, when he in the afternoon. ultraviolet B treatment to a research showed there - Professor Prue Hart was a baby. Emma said Ollie’s eczema group of people with early was a need for much was particularly bad around his mouth, Test results showed both Felix’s UV exposure signs of multiple sclerosis more money to be and eventually became infected due to rating and vitamin D levels were ‘quite high’; (MS). invested in the area. constant picking and licking. and he was among the babies found less likely to be diagnosed with eczema than She found the therapy, previously used for “Australia should be the capital of where this She tried everything before resorting to those who had had less sun exposure. the treatment of the skin condition psoriasis, research is undertaken; we’re a country that gets steroid treatment, which finally beat it. delayed MS in high-risk patients. Trials of vitamin more sun than anywhere else and it’s really about Emma, who works as a nurse for the D supplements trials had not shown the same finding where that balance is in the message we When second son Felix was born, Emma Childhood Allergy and Immunology reduction in the progression of the disease. give people about safe sun exposure,” she said. wanted to do all she could to prevent him Research Group, encouraged anyone who from suffering that same discomfort, so could participate in studies of these types to Also close to human trial stage is work by Dr “You should never get sunburnt, but a lot of the jumped at the chance to participate in help. Shelley Gorman, who in 2014 released research messages now are about how much sun you research which may provide answers. showing low dose UV light given to mice on need to get vitamin D, when there are all these a high-fat diet found reduced signs of type other molecules to consider – so it may turn out She signed him up for Dr Palmer’s study, 2 diabetes. Those results prompted her to you need a bit more sun or a bit less sun.” “The research is gradually the findings of which were published in the investigate the molecule nitric oxide. She found uncovering things that do help Journal of Allergy and Clinical Immunology that blocking release of nitric oxide from skin after in 2018. Felix was one of 195 children to take to manage and prevent these UV exposure prevented many of its beneficial allergies, and participants have effects. the added benefit of having the “We are now trying to find out how that happens immediate support of experts if they and what pathways are involved,” Dr Gorman need it.” said. - Emma Snelgar
“One thing we are really interested in is if UV light changes the way adipose tissue works. Brown “For Ollie, his allergies weren’t life threatening adipose tissue is responsible for making heat – but for other children they can be, so when babies get cold, brown fat creates heat to anything we can do to stop that happening keep them warm. to a child, if we can, we should do it,” Emma said. “In the past 10 years it has become a really exciting area of research because it was Dr Palmer said although the results were previously thought to be just a baby thing and promising, much work is still needed to didn’t apply to adults, however some adults be done to determine safe levels of sun do have little deposits, especially in neck areas exposure. which are exposed to sun. “There’s a lot more work that needs to be “We have this hypothesis that exposure of skin to done before we can translate this into a solid sun may send a message to underlying tissues like community message, but definitely from an brown adipose to produce heat, and now we are allergy point of view, it’s opening up a really doing animal studies to see if that is the case.” important area of research,” she said.
Dr Gorman said the researchers were currently making great strides towards gathering the Dr Debbie Palmer research that policymakers needed to develop Emma Snelgar with her sons Felix and Ollie, who took part in the study. Photo courtesy The West Australian
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GIVING WINGS TO A GENERATION OF INDIGENOUS LEADERS
n 2005, the Telethon Kids Institute won a National Health & Medical Research Council Indigenous Capacity Building Grant that drew Itogether a team of 10 dedicated investigators – all Aboriginal researchers working to improve the health of people in their communities. Since completing the grant in 2009, many have emerged as national leaders in their fields.
The grant, Not Just Scholars but facilitated had been their introduction Leaders: Learning Circles in Indigenous into the scientific world, providing a safe Health Research, was the first of its kind place to explore their fields. aimed at developing a critical mass of Indigenous researchers who could undertake “It brought us into a space to do our research high quality research into health priorities helped by senior researchers like Deb determined by Indigenous people. Lehmann who were the arms around us, put there to both hold us and put the right The five-year project – developed and led by pressure on us,” Mr Pearson said. Associate Professor Deborah Lehmann – saw Indigenous researchers linked up with centres “They supported us when we came together of excellence in research in Australia and and when we went back into our research internationally, to pursue research across a worlds, and that has formed the foundation spectrum of issues including mental health, for all our work since.” self-esteem, gender, substance abuse, bullying, juvenile justice, primary health care, Associate Professor Lehmann mentored the and human rights. original group from its inception, helping the participants achieve their goals and become Professor Juli Coffin, who recently returned independent researchers. to Telethon Kids, was one of the 10 original Capacity Building Grant investigators. The only She said it had been a mammoth task one living in regional Australia at the time, she – managing a big team of investigators said the opportunity it had offered her had spread across institutions around the country, been nothing short of amazing. organising meetings and workshops, and overseeing the diverse needs of each Professor Juli Coffin and Glenn Pearson “It was the mentoring and support I got; member of the group. However, her people always said I had a different way of prediction at the time – that many were looking at things and held some innovative poised for great careers – was spot-on. “I’m pleased we supported them; the have retained links to Telethon Kids – including ideas, but I never really got to put them into outcome has been really good and they really Professor Coffin who, although based in practice,” Professor Coffin said. She was delighted many had done so should be the people working here and telling the Kimberley region, recently re-joined the ‘fantastically well’, applauding them as us how to do Aboriginal health research.” Institute after holding distinguished positions “So for me, that was one of the first times I leaders in Aboriginal health research and for including Head of Campus and Executive could see a need and answer it in a way being committed to translating that research In addition to their research, those who Director, Notre Dame Broome. I knew the community would respond to, into practice. took part in the grant hosted a National without being told how I had to do it.” Roundtable on Research on Racism towards “Living in the Kimberley has its challenges “Leading that grant was the hardest thing Indigenous Australians, which led to a united when it comes to professional connectivity, Glenn Pearson, Head of the Institute’s I’ve done,” she said. “I value the knowledge Declaration and a submission to the Human but with the right space to think and create Aboriginal Health Research Focus Area – and friendship of all the investigators and Rights and Equal Opportunity Commission. in a culturally responsive way, I hope to see who was invited into the group to undertake am delighted that it progressed; it was just a Aboriginal ways of working in the research his own doctoral project – said for many of question of mentoring and helping them. The grant produced five completed PhDs, with space as the norm instead of the exception,” the investigators, the grant and the work it most who took part now regarded as leaders Professor Coffin said. in their respective fields of research. Many
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Professor Ngiare Brown NHMRC Indigenous One of the first Aboriginal doctors in Australia, HORSES HELPING HEALING Capacity Building Grant Ngiare is a founding member and was Foundation CEO of the Australian Indigenous Doctors’ Association, and is a founding While her initial work at the Telethon Kids She said if there was trauma at home, some member of the Pacific Region Indigenous Institute was around bullying, Professor Juli kids found it difficult to express that or even Where are Doctors’ Congress. In 2015 she established Coffin’s most recent research focuses on know if it was normal – often resulting in not-for-profit organisation Ngaoara, focused the healing power of horses – also known as behavioural issues. Teachers and caregivers on Aboriginal child and adolescent wellbeing. equine-assisted learning. could mistake this for attention-seeking, She is currently a Commissioner with the they now ? and children were often misdiagnosed and National Mental Health Commission. “You or I could be the best psychologist in medicated to manage their behaviour. the world but we can’t get the same result Professor Dawn Bessarab someone interacting with a 600kg horse “What we do is not about unpacking Professor Juli Coffin Formerly of Curtin University, Dawn is Director Now Ellison Professor of Aboriginal can get,” Professor Coffin said. the issues,” Professor Coffin said. “It’s a of the Centre for Aboriginal Medical and resourcing program about providing our Research at Telethon Kids, Juli leads the Dental Health at UWA. A social worker with cutting-edge Equine-Assisted Learning Equine-assisted learning is an innovative most vulnerable young people with the extensive experience in Aboriginal child form of experiential learning, based on the tools around healthy relationships and self. Program and is highly regarded for her protection, community and family violence, innovative research methods. idea that horses can help people to express she is chief investigator on several NHMRC themselves more openly and honestly. “The one thing it does do effectively, grants and is highly regarded for her expertise. Participants are guided to interact with that’s hard to do in a classroom, is self- Associate Professor Ted Wilkes AO horses in different ways, enabling them to regulate emotions like anger, sadness, fear Ted was the Director of the Derbarl Associate Professor Dan McAullay develop new insights and skills that will help and happiness. It starts to set up much Yerrigan Aboriginal Health Service in Perth A registered nurse and former Aboriginal them relate better in relationships and cope better patterns around the types of issues for 16 years and is a former Associate health researcher at Telethon Kids focused with life’s challenges. Aboriginal youth are having in their learning Professor at Telethon Kids. He is also a on maternal, infant and child health, Dan is environment. former co-team leader of the Aboriginal currently Director of the Centre for Improving Professor Coffin first ran the equine- Australian Research Program at Curtin Health Services for Aboriginal and Torres Strait assisted learning program as Nguudu “My thinking is I’m sure there’s a better University’s National Drug Research Islander Children and Families (ISAC), based Barndimanmanha (horses making good) in way than setting up another cycle of Institute. In 2014 he was made an Officer at UWA. Geraldton, on Yamaji country in WA’s Mid drug addiction – it’s an alternative way to of the Order of Australia for distinguished West. A staggering 370 young Aboriginal provide calmness and regulate emotions.” service to the Indigenous community Dr Janet Hammill AM people went through the pilot program – in areas of public health and welfare, Janet, whose research focuses on FASD and the youngest just six years old. among other achievements. other alcohol and substance abuse-related harm, now leads the Collaboration for Alcohol Some took part to develop leadership skills, WHAT’S Professor Cheryl Kickett-Tucker Related Developmental Disorders within the and others to help overcome behavioural Cheryl is a leading researcher in the Perinatal Research Group at the University issues that often resulted in school NEXT School of Education at Curtin University, of Queensland Centre for Clinical Research. suspension and relationship issues. The program has moved to Yawuru focusing on Aboriginal education and In 2008, Janet was made a Member of country in the Kimberley, where it is wellbeing. She is founder of the Pindi Pindi the Order of Australia (AM) for service to “The biggest focus is around healing known as Yawardani Jan-ga (horses Pty Ltd Centre for Research Excellence in the community through health services and trauma,” Professor Coffin said. “The doing healing). Aboriginal Wellbeing and was named WA for Indigenous women and children, and leadership component is really important, Local Hero 2019 as part of the Australian research into the effects of FASD. though, because we didn’t want the of the Year Awards. program stigmatised in the community Professor Coffin is training nine practitioners to help deliver equine- Dr Jocelyn Jones as being for people who were mentally Associate Professor Michael Wright unwell.” assisted learning, in collaboration with Jocelyn is an Aboriginal epidemiologist and the Equine Institute of Australia. A Research Fellow in the School of Senior Research Fellow at The University of Occupational Therapy, Social Work and Western Australia, specialising in qualitative Speech Pathology at Curtin University, and data linkage methods. She completed Michael is currently lead investigator on her PhD in 2018. the Looking Forward, Moving Forward Project; funded by the NHMRC until Professor Helen Milroy 2021. He was lead investigator on the Helen, a child and adolescent psychiatrist, left Looking Forward Project (2011 – 2015) the grant project partway through but went that developed the Minditj Kaart-Moorditj on to hold significant national roles including Juli Coffin is supported by Mineral Resources Kaart Framework. Co-designed by as a Commissioner with the Royal Commission and the Ellison Family, while the Aboriginal Nyoongar Elders and service providers, into the Institutional Responses to Child Sexual research area is supported by the Packer it is a culturally-safe system change Abuse and a Commissioner with the National Foundation and Telethon. intervention that has been implemented Mental Health Commission. Currently a UWA in mental health and drug and alcohol Professor, she was recently appointed the services in the Perth area. Australian Football League’s first Indigenous Professor Juli Coffin Commissioner.
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GRADUATION GOALS FOR COMMUNITY RESEARCHERS
Five Fitzroy Crossing women have “They helped us form and maintain been awarded nationally-recognised positive relationships with community qualifications after working with the members, ensuring we’re working in a Telethon Kids Institute’s Alcohol and culturally appropriate way and following Pregnancy & FASD Research Team, cultural protocols.” thanks to funding from 100 Women. The women learnt a wide range of The women completed their Certificate skills, including health and safety, II in Community Services at Northern working with a diverse range of people, Regional TAFE last year while working with communication skills, preparing a resume, Telethon Kids researchers to carry out the and first aid. Alert Program® Study. Ms Wagner said the women had been Project coordinator Bree Wagner said integral in providing cultural support and the relationship had created valuable translation services, as well as helping outcomes for both Telethon Kids and the parents involved in the Alert study fill out wider Aboriginal communities where the questionnaires. They had also helped with women live. student testing in Fitzroy Valley schools, and were involved in sharing feedback “We call them our two-way partners,” with the families. Ms Wagner said. “The research would be almost impossible to do without their Ms Wagner said the TAFE certificate support. the women had earned would enable
them to build further on the skills and a third woman has recently secured experience they had acquired. employment as a mental health worker.
“The skills these women gained have Asked why they chose to pursue allowed them to branch into roles within the certificate, all five women said the community space, giving them the they wanted to help people by experience to find the job they want,” Ms strengthening the health of children in Wagner said. their communities, so they could get an education and grow up to get a good “It’s given them the confidence to have a job. greater voice in their community and set a positive example for their children.” Results of the project will be available later this year. Since graduating in August 2018, several of the women have secured employment.
One works as a family support worker through the local women’s resource centre, another has joined the Remote The Alert Program® Study was funded by School Attendance Strategy team, and a National Health and Medical Research Council Project Grant and 100 Women.
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PIONEERING RESEARCH COULD BE KEY TO KEEPING CANCER IN CHECK
ancer research is being reimagined after a collaboration between the Telethon Kids Institute, the Peter Doherty Institute for Infection and CImmunity, and international researchers unlocked game-changing new knowledge about how the immune system puts melanomas to sleep.
The team behind the pioneering “We’ve known for a long time that this research – led at Telethon Kids by Dr suppression process could happen, but Jason Waithman, Head of the Cancer found it very difficult to study in the past.” Immunotherapy Group – believe the breakthrough has the potential to effectively Dr Waithman said the research and associated cure cancer, by rendering cancer cells model represented a major step forwards in the permanently dormant. control of cancer.
The researchers set out to investigate the role “There are three stages of cancer control, of a particular immune cell – tissue-resident T referred to as the ‘three Es’,” he said. “Cancer (TRM) – in controlling the growth of melanoma can be eliminated, the cancer cells can tumours. escape and cause tumours, or a state of equilibrium can be reached. These can all be “Our initial research found that TRM cells can mediated by the immune system.” make cancer cells dormant, or put them to sleep, through a process called cancer This last stage — reaching equilibrium — is immune-surveillance,” Dr Waithman said. driving the next part of the research.
Using a mouse model developed by Dr “We’ve discovered that TRM cells act like security Waithman, a team of researchers – led by guards, surrounding the tumour and preventing Dr Jason Waithman Thomas Gebhardt at the Peter Doherty Institute it from escaping,” Dr Waithman said. at the University of Melbourne – was able to track both the TRM and cancer cells and WHAT’S observe them in action. “Through the research we watched this Dr Waithman said the researchers hoped unique cell population surveying the the findings would lead to treatments to This allowed them to not only analyse up-close NEXT cancer and keeping it asleep. When potentially convert aggressive cancers into a the relationship between the immune system chronic, manageable condition. .With further funding, Dr Waithman and cancer, but to capture stunning real-time we depleted that specific cell type, the and the team hope to look more video of TRM cells keeping melanoma cells in tumours would then re-emerge.” closely at whether TRM cells can fully check. - Dr Jason Waithman “This really has the potential to put eradicate cancer cells, or if they just suppress them. Various colours used to clearly identify the cancer to sleep forever, essentially different cells, along with firefly genes that providing a cure.” They also want to determine helped to light the cancer cells up, made these “Now we want to know how tumour cells - Dr Jason Waithman if these cells are the targets of tiny tumours visible to the researchers. escape and if there’s a way of preventing this current immune-based cancer from happening. By looking more closely at therapies – knowledge which could “This meant we could track immunity in this how equilibrium is maintained, we can develop The initial research, Tissue-resident memory lead to novel therapeutic targets setting in exquisite detail,” Dr Waithman said. new strategies that make this process occur CD8 T cells promote melanoma-immune for cancer, or specific therapies for more frequently.” equilibrium in skin, was published in Nature. different types of patients.
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NOVEL MODEL LEADS TO WA-FIRST TECHNIQUE FAST LIGHTBULB MOMENT TRACKS URGENT VACCINE POLICY
The ground-breaking research growing tumours, spontaneous metastatic demonstrating how the immune systems spread, stably controlled small tumours, keeps melanoma in check was made and tiny dormant melanoma lesions which nalysing samples is a vital part of research, providing the answers possible thanks to a novel cancer persisted long-term. needed to move forward with innovative new treatments and life- transplant model developed by Dr saving vaccines. But this process is often very time-consuming, taking Waithman. “Interestingly, we saw tumour outgrowth A sometimes occurring many months after many months to complete, and the long wait for information can have “A transplantable model is ideal as it gives inoculation – suggesting these tumours lay devastating consequences. us full flexibility to modify the cancer cells dormant,” Dr Waithman said. prior to transplantation,” Dr Waithman said. “This was a lightbulb moment that “That meant we could include multiple prompted us to then ask challenging tags on the cancer cells, making them questions about how the tumours were This is especially true for children in Papua “The most exciting thing about this express different fluorescent colours and able to remain dormant – a process New Guinea, where pneumonia is a major new method is that we now have a glow like a firefly. This in turn allowed us to caused by immune-mediated equilibrium. killer for kids. Pneumonia is responsible for platform that can be used across all track the cancer progression and observe one million deaths globally each year, but microbiology studies and on a much the disease in action.” “This led us to identify the TRM cells – leading Papua New Guinea has the highest rate – 23 greater scale, including areas such as ear to the exciting research which has just per cent of children don’t make it to their fifth infections, rheumatic heart disease and skin Dr Waithman said the researchers took a been published in Nature.” birthday. infections,” Dr Kirkham said. clinically relevant strategy by targeting the outermost skin layers where melanoma With new vaccine policies urgently required “It opens the door for the Wesfarmers Centre naturally occurs. This involved light to save the lives of children, researchers from of Vaccines and Infectious Diseases to be a abrasion of skin, followed by epicutaneous the Telethon Kids Institute worked closely with key player in a diverse range of international application of melanoma cells. the Papua New Guinea Institute of Medical collaborations – the opportunities are Jason’s research has been supported Research (PNG IMR) to collect samples endless.” Using his model they were able to observe by BHP, Cancer Council Western and find a way to analyse them as soon as outcomes reflecting distinct disease stages Australia and the Brady Cancer possible. seen in patients, including progressively Support Foundation. Thanks to funding from the Wesfarmers WHAT’S Centre of Vaccines and Infectious Diseases, researchers established a new technique that NEXT dramatically reduces analysis time. Instead of just 24 samples a day, researchers can now Researchers from Telethon analyse 96 every 90 minutes. Kids are currently using the new fast-track technique “With this new method we could get through to assist clinicians at King 2,400 samples within a week, where as Edward Memorial Hospital previously this would have taken us more than in their studies to prevent six months,” said Dr Lea-Ann Kirkham, Co- skin infections in premature Head of the Wesfarmers Centre’s Bacterial babies. Respiratory Infectious Disease Group. This method will also play a “We were able to get answers much faster, vital role in a $35 million grant identifying which vaccines worked best at developing a world-first group preventing pneumonia and informing new A streptococcus vaccine. vaccine policies at the time they are urgently needed.”
Telethon Kids is the only place in Western Australia currently using this fast-track Dynamic imaging of TRM cells (green) keeping cancer cells (red) in dormancy. Note auto fluorescent hair (green, asterisks). technique, which involves extracting DNA This research is supported by to quickly identify the number of specific Wesfarmers Limited. bacteria present to identify how well different vaccines are working. 60 | TELETHON KIDS INSTITUTE IMPACT REPORT 2019 | 61 PARADIGM SHIFT
RESEARCHERS UNLOCK KEY TO SLOWING LEUKAEMIA PROGRESSION IN KIDS
hen three-year-old Flo Parker injured her hip on a camping trip five years ago, her parents Marny and Daniel thought it would Wbe nothing more than a common childhood injury. But when she reverted to crawling due to the pain she was in, they knew something was seriously wrong.
Scans later revealed the unimaginable: “When we created a pre-clinical model their daughter had a rare form of replicating this leukaemia sub-type, we leukaemia growing in her bone marrow. witnessed substantial bone loss during After years of harsh chemotherapy Flo is development of the cancer. We wanted now in remission, but the treatment that saved to discover what was causing the bone her may have life-long lasting effects. loss, which the existing literature suggests is experienced by more than a third of children “In the long term, bone density is a possible diagnosed with acute lymphoblastic leukaemia. issue we may be looking at,” Marny said. “My understanding is that she could “We managed to identify a signal be looking at the early onset of produced by the leukaemia osteoporosis, in her early 30s.” cells which instructed cells in the “We managed to identify surrounding microenvironment to Flo Parker with mum Marny, Dr Laurence Now, in findings which offer a signal produced by eat away at the bone. Then we Cheung and Dr Rishi Kotecha hope to kids like Flo, Telethon the leukaemia cells thought, what if we stop these Kids Institute researchers have which instructed cells cells from eating the bone away discovered a drug that can not in the surrounding – will this have an impact on the “To date, the main strategy for cancer therapy only prevent bone density loss, microenvironment to development of leukaemia?” in children has focused on targeting malignant WHAT’S but has the potential to slow eat away at the bone. cells with chemotherapy, which is toxic for leukaemia progression. The world- Then we thought, what if The researchers used a leukaemia cells but also toxic to the patient,” NEXT first discovery has prompted a we stop these cells from commercially available drug Dr Cheung said. change in thinking around the eating the bone away – called zoledronic acid – already The researchers plan to expand the “This new research could provide us with best way to target treatment. known to be safe for children and study, using similar treatment on will this have an impact a powerful adjuvant therapy. It won’t used to treat brittle bones – to other sub-types of the same kind of on the development of replace chemotherapy, but we propose Telethon Kids Cancer Centre target the bone-eating cells in leukaemia to see if a similar impact leukaemia?” that using chemotherapy and treating the researcher Dr Laurence Cheung, the microenvironment around the can be achieved; and to ensure that microenvironment at the same time will have who led the team which made - Dr Laurence Cheung leukaemia cells. zoledronic acid is compatible with more benefit than just chemotherapy on its the discovery, said the findings, conventional chemotherapy agents. although pre-clinical, were “Importantly, we found that this not own. promising and suggested that targeting the only compensated for leukaemia-dependent microenvironment around leukaemia cells bone fragility, but also reduced leukaemia “Although there’s quite a way to go yet, it’s could not only help fight leukaemia, but progression,” Dr Cheung said. exciting to think about the potential dual simultaneously provide relief for one of its most benefit this offers, and the paradigm shift it common and painful side-effects – bone loss. He said the discovery that cells surrounding the represents for children’s leukaemia.” leukaemia cells could contribute to failure or “Acute lymphoblastic leukaemia is the most success showed how important it was to look at This research was carried out in collaboration This research was supported by the Children’s common cancer among children and remains the whole picture. Although similar thinking had with Curtin University, The University of Western Leukaemia and Cancer Research Foundation a common cause of cancer-related death previously been applied to cancer in adults, the Australia, the Harry Perkins Institute of Medical and Cancer Council Western Australia. before 20 years of age,” Dr Cheung said. finding offered an exciting new treatment angle Research, St. Jude Children’s Research for children. Hospital, USA, and Perth Children’s Hospital.
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This research shows how we work with others to make a difference COLLABORATING FOR IMPACT
EARLY YEARS INITIATIVE OFF TO STRONG START
10-year agreement forged between the State Government, Minderoo Foundation and Telethon Kids Institute is well underway, with the first Aof four locations announced by Community Services Minister Simone McGurk at the end of 2018.
CoLab – Collaborate for Kids – is a joint initiative of the Minderoo Foundation With more than 50 language groups calling and Telethon Kids, focused on giving Katanning home, the region is the most every Australian child the best foundation ethnically diverse in Western Australia, with in life. numerous cultural and religious backgrounds.
The Early Years Initiative, announced in March Engagement has already begun in the Central 2018, sees the two organisations join forces Great Southern, with other locations due to be with the State Government in a $49.3 million announced later this year. unprecedented partnership, working to The partnership has drawn together an empower and support communities to assess impressive board, led by former Children’s the needs of their children and families in Court magistrate Dr Sue Gordon and former identifying what works best in their individual UnitingCare West chief executive Sue Ash, who environment. are co-chairs.
Over a decade, the initiative will try, test and “Research tells us the first four years of a child’s deliver evidence-informed, community-led life are critical in creating the platform for their approaches to child development in four future success,” Dr Gordon said. Minderoo’s Nicola Forrest and CoLab Director Professor Donna Cross communities. “The enthusiasm of the Central Great Southern Southern to discover the best approaches to The initiative will work within four communities shires to be involved in this unprecedented improving the health, learning and development of – metropolitan, regional, remote and ultra- initiative demonstrates the strong desire for this our children. Our goal is to achieve real and lasting WHAT’S remote – with the Central Great Southern kind of commitment to change for children. progress and then apply our learnings across the shires of Katanning, Broomehill-Tambellup, board for the benefit of the whole state.” NEXT Kojonup and Gnowangerup selected as the first “The Early Years Initiative will work with community to take part. communities like those in the Central Great Minderoo’s Mrs Nicola Forrest said Minderoo’s greatest successes have come from collaboration. The remaining three communities are due to be announced by the “One cause I’m particularly proud of is the Early State Government by the end of Years Initiative, a ten-year partnership between the year. the State Government, Telethon Kids Institute and Minderoo,” Mrs Forrest said. “Because of the Engagement in the Central Great Initiative’s structure, it’s able to have incredible Southern community is continuing impact across communities and really support and to establish a framework for the empower families and children. Early Years Initiative.
“That kind of collaboration is the key to our philanthropy. We live by the motto ‘If you want to go fast, go alone. But if you want to go a long way, you have to go together’”.
CoLab - Collaborate for Kids - is a partnership between Minderoo Foundation Children at the Katanning Library and Telethon Kids Institute.
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BOBBIE BRINGS BABY’S BRAIN TO LIFE
A lovable blue creature by the name of Working with the creative team at Bobbie has won the hearts and minds of 303 MullenLowe and Siamese, Bobbie Western Australians and is helping to build was created as a representation of a a stronger understanding of early childhood baby’s brain, showing how it responds to development. meaningful moments.
Bobbie was the central character in the Bobbie’s name was chosen from hundreds Bright Tomorrows Start Today campaign, of suggestions made by children during the seen across television, social media, Telethon weekend. newspapers and shopping centre billboards for seven weeks from October to December Evaluation has since shown the campaign’s 2018. key messages were widely understood by the West Australian public. It scored The campaign was created by CoLab – significantly above the benchmark for similar Collaborate for Kids – a joint partnership campaigns when compared for novelty, between Telethon Kids and the Minderoo affective impact and relevance. Foundation focused on giving every Australian child the best foundation in life. Of those who remembered seeing the campaign, more than 90 per cent recalled Bright Tomorrows Start Today uses the TV commercial, demonstrating its communications science to address current significant visual impact. thinking patterns in Australia to explore key concepts of early childhood development The results pointed to a significant shift and learning. in understanding that children begin to learn from birth. There was also a shift in The first phase of the campaign aimed to acknowledging that the first two years lift public recognition of the significance of life have a long-term effect on brain of the early years, and the importance of development. interacting from birth to build young brains.
WHAT’S NEXT
The next phase of the campaign is now in development, with Bobbie Nicola and Andrew Forrest with Bobbie. being used to transform the way early childhood is understood across Channel 7’s Monika Kos, Professor Donna Cross and Nicola Forrest with Bobbie. Australia. CoLab - Collaborate for Kids - is a partnership between Minderoo Foundation and Telethon Kids Institute.
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‘MAMA’ DEB’S DEDICATION TO The highly-respected researcher number of years investigating which spent 17 years living in Papua New pneumococcal vaccines could provide SAVING CHILDREN IN PAPUA Guinea (PNG), following her passion the best possible protection for babies, to reduce the burden of childhood and the optimum time to provide them. infectious diseases. Now, an award named NEW GUINEA in her honour will allow others to follow in her “Even now, infant mortality caused by footsteps. pneumonia is 10 times higher in PNG than in Australia, and back then it was Funded by the Wesfarmers far worse,” Professor Lehmann Centre of Vaccines and said. hildren living in Papua New Guinea have good reason to call Infectious Diseases, the annual Deborah Lehmann Research “We really needed to try and Clinical Associate Professor Deborah Lehmann ‘Mama Deb’ – her Award will provide training and address this dire situation in any dedication to preventing pneumonia can be credited with saving development for early career way we could, whether it be C researchers and students in the through vaccination, nutrition the lives of many thousands of babies. Western Pacific Region, ensuring or appropriate diagnosis and her groundwork can be built treatment. upon for many years to come. “We also documented that even Professor Lehmann’s research in if you lived one hours’ distance the region began in the Southern from a hospital, a child’s risk Highlands of PNG in August 1981, of dying from pneumonia was after she accepted a position as much higher, so access to health Director of the Tari Research Unit care was vital.” (TRU). Although Professor Lehmann “I remember walking into the TRU’s office made significant research strides while in PNG, – a two-room hut where I met the village things were not always plain sailing, and she reporters, some wearing their traditional Huli has many quirky memories of the years she wigs and loin cloths,” Professor Lehmann said. spent there. “There weren’t any computers at that point and I was perplexed by the working hours “During my time in Tari, all of our data had to being precisely 7:45 to 4:06, especially when be transported by road to another town for no one had watches! data entry into a mini computer that took up the space of a whole room,” she said. “I signed up for two years and ended up staying “Miraculously no data were lost on the way, however some data for 17 – I met my partner from a maternal nutrition study Michael Alpers at the were in a suitcase stolen from Papua New Guinea my house – and were later seen Institute of Medical decorating a Huli’s wig!” Professor Research (PNG IMR) Lehmann said. in Goroka and have continued to work closely with the Institute for over “One day we were working 37 years now – more than in our office and a big tree half my life.” was being cut down outside - Professor Deborah Lehmann – someone tried to provide some advice but was told ‘Don’t tell us what to do, Professor Lehmann’s work has we know how to cut down been primarily focused on the prevention of trees’. The next minute the pneumonia – the major killer of young children tree came crashing down in PNG and other third world countries. on our roof – luckily no one was injured.” After becoming Director of Pneumonia Professor Lehmann with past Huli staff of the PNG Institute of Medical Research Research at PNG IMR, she spent a - Professor Deborah Lehmann
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After nearly two decades in PNG, Professor Lehmann moved to Australia in 1998 and joined Telethon Kids, where she has used the DEBORAH LEHMANN skills and research expertise she acquired in WARAJANGA MARNTI WARRANJA PNG to establish programs in acute respiratory infections, otitis media (middle ear infections), RESEARCH AWARD and Aboriginal health. – TOGETHER WE WALK ON She has led ground-breaking work including the Swimming Pool Study, which established COUNTRY the health benefits of introducing swimming pools into remote Western Australian Aboriginal communities; and the Kalgoorlie Otitis Media Research Project. $5 million commitment from BHP has allowed Telethon Kids The impact of Professor Lehmann’s work in PNG Professor Lehmann continues to collaborate researchers and Aboriginal communities to join hand-in-hand in a over the past 30 years is impossible to measure, with researchers at PNG IMR and in Australia bid to make Fetal Alcohol Spectrum Disorder history in the Pilbara. according to Dr Tom Snelling, Director of the on significant ongoing research projects, and A Wesfarmers Centre of Vaccines and Infectious has encouraged others at Telethon Kids – many Diseases. of whom she has mentored – to collaborate on projects in the region, including Dr Peter “We know pneumonia is responsible for more Richmond, Dr Christopher Blyth, Dr Lea-Ann than one million childhood deaths around Kirkham, Dr Anita van den Biggelaar, and Dr the world each year, so Professor Lehmann’s Local leader and CEO of Wirraka The program, including its name, Ingrid Laing. work preventing pneumonia ensures many Maya Health Service, June Councillor, was carefully developed after close thousands of kids make it through their has spent years working to highlight consultation with the local Community Renowned as a generous and compassionate vulnerable early years,” Dr Snelling said. suspected high rates of Fetal Alcohol Reference Group and the Hedland mentor devoted to training and nurturing the Spectrum Disorder (FASD) among Aboriginal FASD Network, representing more than 30 next generation, Professor Lehmann has had a “We are very proud to announce the Deborah children and youth in some Pilbara health, education and justice services. profound impact on the careers of countless Lehmann Research Award in recognition of communities. In response, and at the request younger researchers, including 10 Aboriginal Professor Lehmann’s dedicated research in of BHP, in 2014 the Telethon Kids Institute with “Naming the program was actually a really researchers whom she mentored as part of an PNG, and we look forward to seeing young Wirraka Maya established a FASD research important contribution,” one FASD Network NHMRC Indigenous Capacity Building Grant researchers continuing her legacy by providing program in Port Hedland, Yandeyarra and member said. (see story on page 52). better prevention and treatment solutions for Warralong. children in this region.” “Alcohol is a sensitive topic. If you just Combined with her considerable research The Warajanga Marnti Warranja – Together called it Hedland FASD or something like achievements, that contribution as a mentor The inaugural recipient of the $30,000 annual We Walk on Country program was based that, people might be embarrassed and means Professor Lehmann’s influence will be award, Celestine Aho, was formally announced on successful strategies employed in the reluctant to engage. The name, and the use felt at the Institute – and most importantly in March 2019. Ms Aho will investigate the true Kimberley and elsewhere in the world, but of the Nyangumarta language, reflects the by children and their families – long after her burden of otitis media and the cause of these adapted for the Port Hedland context. collaborative nature of the program.” impending retirement. infections among children living in the Eastern Highlands of PNG.
Professor Deborah Ms Aho’s passion for research around otitis Lehmann with inaugural recipient Celestine Aho media stems from her little brother’s hearing loss and learning difficulties after recurring ear infections as a baby, and she is now determined to highlight the importance of ear health.
“My family knew little about the effects of otitis media on hearing as it was considered a normal part of growing up, and we didn’t have education around ear health issues or awareness of audiology support services,” Ms Aho said.
“As part of my research, I hope to bring emphasis on the awareness of otitis media in the community and in primary health care.”
The Pilbara FASD team: (from left) Michelle Gray, Sangita Daniel, Adrian Clinch, Glenn Pearson, David Tucker, Elaine Clifton, Kaashifah Bruce, Roz Walker, James Fitzpatrick. 72 | TELETHON KIDS INSTITUTE IMPACT REPORT 2019 | 73 COLLABORATING FOR IMPACT
Glenn Pearson, Head of the Aboriginal Health “Through research and education people are Research Focus Area at Telethon Kids, said the listening and yarning about it,” she said. “As “Through ‘walking together’, the $5 million commitment from BHP had enabled long as we walk together, we know we are community as a whole is focused and the Institute to develop a foundation to work supported.” mobilised in tackling FASD and giving with Aboriginal families and children in the their children the best start to life. Pilbara both on research and other issues around Since embarking on the program the research This is the power of translational FASD, including prevention. team has collected more than 1,000 surveys to research. FASD is preventable and we ascertain community awareness of FASD; trialled “The Institute has developed relationships with a school-based therapy program that reached all want every child to have the best community that involve much more than just more than 100 primary school children; and possible start in life.” scheduling research,” Mr Pearson said. “It’s conducted FASD diagnostic clinics to increase - Dr James Fitzpatrick really important that these communities can the number of local children receiving a FASD set the conditions on which they are involved in diagnosis. research that affects them. Mr Pearson said the Institute was extremely As a result, the team has helped make FASD grateful to BHP for its partnership and funding, a front-of-mind issue for Pilbara health and which would help to set Pilbara children at risk medical services, schools, and non-government “It’s also provided the opportunity of FASD on a more positive trajectory. to build local capacity and provide organisations – leading to increased diagnoses of children with FASD, the development of a research training and career “This program will increase the opportunity for clinical referral mechanism, and research into children not even born yet to have a quality of development for Aboriginal people to potential therapeutic interventions. work in their own communities.” life consistent with other children,” Mr Pearson said. - Glenn Pearson “Our work, including strong engagement with the Port Hedland community and local capacity “It’s imperative that we continue to work building of Aboriginal co-researchers, has proven together to create a brighter future for all Community researcher Margaret ‘Sissy’ Ramirez successful in maintaining levels of awareness children and a community that understands, said she had learnt the importance of having about the risks of drinking during pregnancy at welcomes and supports them.” good data to help Aboriginal people to tell their around 94 per cent,” Mr Pearson said. stories. An additional $5.4 million worth of funding has “It’s a really important way for people to also been secured to translate FASD prevention understand your message,” she said. research in other sites.
Fellow community researcher Elaine Clifton said Chief investigator on the program, Dr James The Pilbara FASD Project was she saw Telethon Kids as the face of FASD in Fitzpatrick, said BHP’s commitment – together supported by BHP. the Pilbara, and working with researchers had with the leadership of Aboriginal community taught her to be curious about why a particular members and organisations – had created a behaviour was happening. clear path forward to making FASD history in the Pilbara.
WHAT’S NEXT
The team aims to continue working with Pilbara communities and progress towards a broader program that works with families.
Over the coming years, they hope to increase community involvement and leadership in the research by employing local management staff; increasing the number and capacity of community researchers and local champions; continuing to expand the role and involvement of the community reference group; and exploring ways to support increased community policy advocacy.
The team plans to focus efforts on influencing policy to more deliberately identify opportunities and strategies to advocate for change at the community, local, state and national government levels. Launching the project in the Pilbara in 2016
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FASD CONFERENCE UNITES POLICY, Kids, which revealed that more than a third of young people in the Banksia Hill Youth SCIENCE AND LIVED EXPERIENCE Detention Centre had FASD, and nine in 10 WHAT’S had severe neurodevelopmental impairment. NEXT eld every two years, the Australasian FASD Conference is a significant “In our Banksia Hill study 36 per cent of young people had FASD, but we also found .It is anticipated that with wider and unifying event for those in the Fetal Alcohol Spectrum Disorder that 89 per cent had at least one severe marketing, including internationally, sector. The latest conference, held in Perth last November, saw developmental impairment, so in justice we the CRE will attract even greater H believe we should be focusing generally interest in the FASD2020 conference researchers, professionals and families sharing insights and galvanising on neurodevelopment, not just on FASD,” to be held in Sydney, offering further momentum for future collective action. Professor Bower said. opportunities for partnerships and collaborations for all stakeholders. She said those who had attended the workshop had been highly engaged.
“We had a really good group of people and a Hosted by the multi-site FASD Research “We don’t often get to meet each lot of energy that we hope we can build on to Australia Centre for Research Excellence other face-to-face, and we enjoyed guide management and how justice services See Banksia Hill Project (CRE), which has its Perth node at the the confluence of clinicians, carers and are structured,” Professor Bower said. Telethon Kids Institute, the 2nd Australasian researchers, policy and practice people.” story, page 30. FASD Conference 2018 was attended by more than 350 delegates, including The conference also firmed connections international researchers, health, justice and between clinicians and researchers around education sector professionals, and families Australia and with international researchers, and carers of people with FASD. opening opportunities for strengthened collaboration. One included a Memorandum of The event opened with Federal Health Minister Understanding with Canadian FASD researchers Greg Hunt and Indigenous Health Minister to work together on prevention, diagnosis and Ken Wyatt announcing a $7.2 million 10-year management of FASD. action plan which will drive continuing efforts to reduce the impact of FASD on individuals, Professor Bower said the conference helped families and communities. researchers to refine the focus of future research beyond the current CRE. Co-Director of the CRE and leader of its Perth arm, Professor “The highlight for me “There is a lot to do in FASD, but it is Carol Bower, welcomed the new was seeing how much clear that FASD is just part of a bigger action plan, saying the funding picture of neurodevelopment in would help continue the national people enjoyed seeing childhood – for example, we have progress made in addressing FASD everybody involved with a project looking at trans-diagnostic – progress which could only be FASD getting together approaches to early development,” made by giving all stakeholders a to think about how we she said. voice. progress the research.” - Professor Carol Bower “Often before you can make a She said a key aim of the CRE definitive diagnosis such as FASD, was to involve consumers, parents autism or ADHD, there are hints that and carers of people with FASD in progress might not be going right at guiding its work. that stage. That’s an important development of our FASD work and other research at the “The conference firmly embedded the Telethon Kids Institute.” perspectives of consumers, parents and carers in guiding future research and policy priorities, A workshop held the day before the building on previous community reference conference saw lawyers, police, child group consultations,” Professor Bower said. protection staff and consumers join researchers to hear valuable insights which will help guide “The highlight for me was seeing how much management of people with FASD in the justice people enjoyed seeing everybody involved system. Those insights were made possible with FASD getting together to think about how thanks to ground-breaking work carried out we progress the research. by Professor Bower and her team at Telethon Panel discussion at the 2nd Australasian FASD Conference
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PARENTS HELPING TO PUT FASD DRIVING A VACCINE REVOLUTION INTO PERSPECTIVE magine a future where a child could be vaccinated against a virus For Neil Reynolds, foster dad to siblings aged other kids.” at birth, and that treatment was not only highly effective in almost all seven and 10 years, who both have FASD, the babies, but was also the only vaccination necessary for that disease for 2nd Australasian FASD Conference was full of Neil’s seven-year-old foster son, who is I opportunities that only reinforced his positive more seriously affected, is now satisfactorily the child’s entire life. The Telethon Kids Institute is now part of an ambitious, outlook. managing Year 2, following years of consistent, yet achievable, global bid to produce such one-shot vaccines. therapeutic, ‘good old-fashioned’ parenting. Well researched and with seven years’ experience parenting children with the condition, he and his wife know that a “The reality with these kids is you get consistent, appropriate approach helps each out what you put in and if you put in a child to maximise their achievements. whole lot, you get a whole lot back.” According to the Telethon Kids Institute’s – the Human Vaccines Project “That’s the message we tried to convey through - Neil Reynolds newest senior researcher, Professor Tobias draws together top researchers the conference: that there is hope for these Kollmann, one-shot vaccines are within from around the world to collaborate kids,” said Neil. reach – if only the amount of funding needed on comprehensively sequencing the “But unlike a mainstream child where it just for the research could be made available. human immune system, and determining the happens, with these kids you’ve got to just “There’s a big difference that can be made – rules for long-lived protective keep pushing and encouraging until you get you get massive rewards from them and they “We know what we have to immunity across globally diverse what you want,” he said. can achieve amazing things. You just need do, and we know how to do it: populations. guidance and support because they are not the only thing keeping us from “It’s a very, very, The conference enabled Neil to share his like anybody else in the community. You’ve realising this dream is securing ambitious goal given it’s Professor Kollmann said the positive message with other parents, dispelling just got to do it a little bit differently and if you the necessary funding,” Professor project aimed to attract $1-2 what he says is general negativity about the even more complex than stick at it, you get great rewards,” he said. Kollmann said. the Human Genome billion in funding over 10 years outlook for these kids. Added to that, listening to decipher how vaccines work. to the successes researchers and clinicians Project, but when Testament to this approach, Neil’s foster A world leader in infectious That knowledge would be the were having was highly affirming for all. successful will transform daughter is now completing Year 5, is able diseases research, Professor start of a ‘vaccine revolution’ the future of human to read and enjoys school. She is a ‘gun’ at Kollmann recently relocated to and be translated into the next “It’s great for parents to be able to sit down computer games and has become highly Perth from Canada – bringing health.” generation of vaccines, targeting and hear of clinicians having success with engaged in maths study, since it has been his research team with him – to - Professor Tobias Kollmann difficult infectious diseases like some of their clients and some of the projects delivered via an iPad. spearhead the Institute’s role as TB, HIV and malaria, and even they have put in place,” he said. the first international hub of the vaccines for non-communicable “She is certainly achieving far greater than Human Vaccines Project. diseases like cancer. “There are researchers finding things out about the expectation was at the beginning of her dealing with behaviours and it’s good they schooling,”he said. Modelled on the successful Human Genome “It’s a very, very, ambitious goal given can pass this on to the parents, so they can Project – which revolutionised biomedical it’s even more complex than the Human put it into place. “Socially she is well-liked and accepted, and research after bringing together leaders in Genome Project, but when successful will she is positive about the learning process, their field to sequence the human genome transform the future of human health,” “It’s also good to speak to people who have even though not achieving as highly as the Professor Kollmann said. done those things and had some success – the effort in consistently following these guidelines ABOUT THE “The human genome consists of about 20,000 is certainly worthwhile.” HUMAN VACCINES genes. Analysing the human immune system is a million times more complicated than that Neil said parents and carers felt valued PROJECT – yet we have the tools to do it! The human in being able to share their insights and health benefits would be monumental.” perspectives with researchers and clinicians. The Human Vaccines Project is a bold public-private initiative that aims to Telethon Kids Institute Director, Professor decode the human immune system to “There are so many different aspects of FASD,” Jonathan Carapetis, said the Institute’s goal of make the next leap forward in human he said. improving kids’ health would be significantly health. By cracking the code to human boosted thanks to its role as a partner in this health, the Project will enable the “It was a fantastic opportunity. Often you have ground-breaking international initiative. clinicians together, researchers together or creation of next-generation vaccines, diagnostics, and therapies across parents and carers together, but it is rare you “This is an example of some of the best diseases. To learn more, visit get them all in the one place – and so many research organisations in the world coming www.humanvaccinesproject.org and of them, with so much passion and knowledge together and inviting us to come on board Neil Reynolds about the subject.” follow @HumanVacProject on Twitter.
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VITAL ROLE FOR TELETHON KIDS
Telethon Kids is one of several academic partners in the Human Vaccines Project, “Given that millions of infants die with others including the Vanderbilt each year from infection or lack of University Medical Center, University of vaccination, the importance of this California San Diego, The Scripps Research work cannot be overstated.” Institute, J. Craig Venter Institute and La Jolla Institute for Allergy and Immunology. - Professor Tobias Kollmann
Professor Kollmann said that as a regional He said the initiative would bring Telethon hub for the project – the only partner Kids and Western Australia to the forefront outside of North America and the only of impactful and prominent international one with a paediatric research focus – medical research efforts. the Institute would make an invaluable contribution to the project’s mission of The lab’s relocation to Perth also adds to ‘decoding the human immune system to the growing momentum around systems transform human health.’ and computational biology, currently being fostered at Telethon Kids and “This will not only make a significant elsewhere in WA. contribution to the development of vaccines and immunotherapies against infectious diseases, but also potentially cancers,” he said.
Professor Kollmann’s new lab at Telethon Kids builds on existing relationships with Perth-based collaborators and consolidates their expertise in conducting large-scale Professor Tobias Kollmann observational cohort studies in high- risk populations. to lead a particular component of the work,” at the forefront and more and more people Professor Carapetis said. are becoming vaccine-hesitant, or even anti- The group will utilise cutting-edge vaccination. technologies, coupled with ground- “It makes the most of our expertise in breaking bioinformatic approaches, understanding the immune system and “Then we have measles outbreaks all over to help determine how and why an engaging populations at highest risk of disease, the world because of increased resistance to individual’s immune system responds like in Papua New Guinea and Aboriginal kids vaccinations in children in particular – so the the way it does when challenged. in Australia, which is instrumental in making downside is immediately palpable and we sure we can understand how all kids can most know this is a dangerous dynamic.” “This understanding will underpin our benefit from vaccines.” uncovering of the key mechanisms crucial to the infant response to Professor Kollmann said vaccination had vaccine or infection,” Professor been one of the most successful medical Kollmann said. interventions to date. However, scientists still didn’t know exactly how vaccines worked and why they worked for some people and The Perth hub of the Human Vaccines not others. Flu vaccinations for example, only Project and the recruitment of Professor worked as desired in up to half the population. Tobias Kollmann and his laboratory team from Canada has been made “It’s an odd thing to say because we know they possible by the Perth Children’s Hospital work, but we don’t understand how they work,” Foundation, Telethon, Stan Perron he said. Charitable Foundation and McCusker Charitable Foundation. “That’s a difficult message to package, Clinical Research Manager Jennifer Kent and Christina Davies with her especially at a time when in Australia and other baby Cate at the launch of the Human Vaccines Project hub in Perth countries, infectious diseases haven’t been
80 | TELETHON KIDS INSTITUTE IMPACT REPORT 2019 | 81 COLLABORATING FOR IMPACT GLOBAL CONSORTIUM AIMS TO BILL & MELINDA GATES PROTECT BABIES FROM THEIR FOUNDATION GRANT AIMS TO FIRST WEEK OF LIFE PREVENT DEADLY INFECTIONS IN EARLY LIFE Babies are most vulnerable to life-threatening of a teaspoon of blood,” Professor Richmond diseases such as pneumococcal and said. whooping cough in their first few weeks of life, yet current vaccines can’t be given until two “In the past we haven’t had the tools to look months of age. in depth at the immune response in very early Newborn babies and their fragile immune of researchers including Dr Anita van den life, because the necessary testing required systems struggle to fight off nasty infections Biggelaar, Senior Research Fellow at the Every year more than one large volumes of blood such as septicaemia, pneumonia and Wesfarmers Centre, to investigate whether million babies around which can’t be taken gastroenteritis – all common causes of giving newborn babies probiotics daily over the world don’t live long “Researchers now have access to when babies are that infant mortality in many countries around their first seven days can boost immunity enough to be immunised vital information that can be used to small. the world. and improve gut health – against these deadly optimise the design of vaccines and significantly reducing the risk diseases, so researchers allow babies to be vaccinated a lot “Researchers now have Now, in an exciting first for of life-threatening infections. “The results from the from the Wesfarmers earlier, with the added benefit of access to vital information the Telethon Kids Institute, the pilot study will give us Centre of Vaccines longer-lasting immunity.” that can be used to Wesfarmers Centre of Vaccines “Thanks to the support of and Infectious Diseases optimise the design of and Infectious Diseases has interesting insight into how the Gates Foundation, have teamed up with a - Professor Peter Richmond vaccines and allow been awarded a Bill & Melinda probiotics can help with researchers from the consortium which aims babies to be vaccinated Gates Foundation grant as part healthy colonisation of Wesfarmers Centre are to optimise current or a lot earlier, with of its mission to ensure more the gastrointestinal tract currently conducting the develop new vaccines the added benefit children and young people and program healthy pilot study in Papua New to provide immediate of longer-lasting survive and thrive. development of the Guinea in collaboration with protection from birth. immunity.” immune system.” the PNG Institute of Medical The US$500,000 grant follows Research,” Dr van den Funded by a National This major NIH research an earlier grant from the - Dr Anita van den Biggelaar Biggelaar said. Institutes of Health (NIH) grant was secured Immunising Pregnant Women US$15 million grant, the thanks to initial pilot and Infants Network (IMPRINT). “The newborns involved Expanded Program data funded by the The funding will enable a team are receiving a first dose on Immunization Wesfarmers Centre. Led of probiotics within the first three days, Consortium (EPIC) by Professor Richmond, followed by six additional doses throughout Study is led by some Senior Research their first 10 days of life. of the world’s leading Fellow Dr Anita van infectious disease den Biggelaar, and “The results from the pilot study will give experts, including Professor William us interesting insight into how probiotics Professor Tobias Kollmann, who recently Pomat, Director of the Papua New Guinea can help with healthy colonisation of the moved to the Telethon Kids Institute from the Institute of Medical Research, this involved gastrointestinal tract and program healthy University of British Columbia, and Professor obtaining samples and investigating vaccine development of the immune system.” Ofer Levy, of the Boston Children’s Hospital responses in 30 newborns born in PNG. and Harvard Medical School. Dr van den Biggelaar said the team The Wesfarmers Centre’s involvement in hoped the data they obtained would Professor Peter Richmond, Head of the the EPIC Study also paved the way for lead to a large multi-site study in PNG Vaccine Trials Group at the Wesfarmers Professor Kollmann’s move to Telethon Kids involving thousands of babies, aimed at Centre, said EPIC arose out of a desire to from Canada and opened doors to further demonstrating the protective effect of understand more about how newborn collaboration opportunities involving the probiotics in preventing major infections babies’ immune systems develop, and how ground-breaking Human Vaccines Project. such as sepsis and pneumonia. they respond to vaccinations. Project collaborators include Professors “The first stage of the study involved Peter Richmond and Tobias Kollmann pioneering a technique which gives (Telethon Kids), Dr Tobias Strunk (UWA), unprecedented insight into the dramatic Professor William Pomat and Dr Rebecca changes occurring in a baby’s body in the This research is supported by Ford (PNG IMR), and Dr Andrew Greenhill first week of life – all using less than a quarter Wesfarmers Limited. Dr Anita van den Biggelaar (Federation University Australia).
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assionate community engagement and promising results have seen a small neuromuscular disorder study begun as a Masters project blossom Pinto a five-year, National Health and Medical Research Council-backed program of research, with international collaboration.
One of the biggest problems facing Designed as a 12-month project young people with neuromuscular involving overnight sleep studies, lung disorders is the risk of breathing problems and motor function tests, and quality caused by muscle weakness during sleep. of life questionnaires, results so far from the pilot study – helped by a high level of The resulting hypoventilation – breathing at engagement from participant families – have an abnormally slow rate, leading to increased been so good they’ve spawned two bigger carbon dioxide in the blood – can eventually projects amounting to a five-year program lead to lung failure, the most common cause of of research into respiratory outcomes for death in people with neuromuscular disease. neuromuscular disease. It’s a problem Telethon Kids Institute researcher and Perth Children’s Hospital respiratory The first, funded by the Duchenne Parent paediatrician Dr Adelaide Withers would dearly Project in the Netherlands and led by Telethon Professor Graham Hall and Dr Adelaide Withers love to solve. Kids Head of Children’s Lung Health, Professor Graham Hall, is a two-year study monitoring In 2016, thanks in large part to a scholarship respiratory outcomes in boys with Duchenne from Muscular Dystrophy WA, she began a muscular dystrophy. it hadn’t been for the community reference Masters project aimed at better understanding, “Since then the project has only group. predicting, and ultimately preventing Together with the initial results from Dr Withers’ continued to grow, with the hypoventilation. pilot, the protocols from that study have in turn neuromuscular community reference “They’ve been incredibly committed to this provided the basis for a five-year, $1.6 million group heavily involved at every research and really important in helping us steer the direction of what we do.” Her pilot study, Clinical Predictors of Respiratory National Health and Medical Research Council stage and helping to shape our Failure in Paediatric Neuromuscular Disorders, grant. This will broaden the scope of Dr Withers’ protocols and research questions is working with 37 children and young people original study and adds a US cohort into the mix, in significant ways.” from across WA who have neuromuscular thanks to a collaboration with Stanford University WHAT’S disorders, including Duchenne muscular and the Lucile Packard Children’s Hospital in - Professor Graham Hall dystrophy and Spinal Muscular Atrophy, to Palo Alto. NEXT identify early markers of hypoventilation. Professor Hall said the overlapping projects Dr Withers said this had included a novel “If we can identify the onset of hypoventilation were a great example of how working closely shift to in-home sleep studies, in response to Dr Withers is continuing to recruit earlier, we know that there’s effective and openly with consumers and community participant concerns about the disruption of for her pilot study, and hopes to treatment,” Dr Withers said. “It’s very well shown members could take a piece of research to the having to spend the night in hospital. transition most of the participants that using non-invasive ventilation improves not next level. over to the longer term NHMRC only quality of life but reduces morbidity and “We’re very conscious of minimising the study. mortality and prolongs kids’ lives.” “Initially we thought we’d have to scale burden for these families, as they’ve often back the project because the burden would already got such a high burden because their be too high,” Professor Hall said. “But the children are often severely disabled,” she said. neuromuscular community said, ‘We recognise “I figure if I can pick this up earlier andtreat this will be hard yakka but if this means we’ll “So, when they told us that they hate having it as early as possible I know I’m going to be never have to do this again and that we’ll get to come in to do sleep studies, we decided improving the quality and the length of the better treatment, please go ahead.’” to try home sleep studies instead. Part of life of my patients, which is all I want to do. the NHMRC project will involve comparing That’s why I come to work every day.” home and in-lab sleep studies, which will be This research is supported by Muscular a lot more pleasant for the patients – and - Dr Adelaide Withers Dystrophy WA and the Duchenne Parent we probably wouldn’t have looked at that if Project in the Netherlands.
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KARRATHA FAMILY JUMP AT “This was followed by a steep learning curve and then adjustment to our new “The more we know about CHANCE TO JOIN SLEEP STUDY situation,” Jodie said. “We tried to stay neuromuscular disease and positive and focused on what Mackenzie respiratory health, the better. could do rather than what she couldn’t.” The deterioration of breathing is a key concern for children like As a result, Mackenzie, now 13, has been Mackenzie, so hopefully this study able to enjoy experiences including will help further identify risk factors overseas travel, concerts and shows, community and social involvement, and and possible future treatments.” has attended the local primary and - Jodie Crane high schools with the help of education assistants. Jodie said participation in the study In late 2017, the Cranes noticed hadn’t been onerous, with the Mackenzie wasn’t waking up as appointments tying in neatly with refreshed as usual, and was experiencing Mackenzie’s regular trips to Perth for headaches and low energy. A sleep study respiratory and other checks, including revealed multiple episodes of obstructive routine sleep studies. sleep apnoea. “We’ve had a few lung function/ Mackenzie’s paediatric respiratory breathing tests over the past six months specialist, Dr Adelaide Withers, suggested that are not invasive or time-consuming, the family join the Clinical Predictors and the staff are always lovely and of Respiratory Failure in Paediatric accommodating,” she said. Neuromuscular Disorders study. “The research may or may not benefit The Cranes – eager to understand more Mackenzie at this point but down the about Mackenzie’s condition and to help track it will certainly benefit other people. with research which may benefit other It’s just good to be involved in it, and to families – jumped at the chance to be have someone keeping an eye on her.” involved. Although the research has not changed Mackenzie’s treatment, the family is pleased to be contributing to the search for answers.
Mackenzie Crane was 10 months old when Mackenzie was diagnosed with Spinal her parents, Jodie and Scott, were given Muscular Atrophy Type 2, a genetic the life-changing news that their daughter muscular disorder which affects the nerve would never walk. cells that control voluntary muscles. It was a working diagnosis only, though, as doctors The Karratha family had noticed that were for years unable to identify the beyond learning to sit up at around five specific genetic fault causing her muscle months, Mackenzie didn’t appear to be weakness. progressing. When a physiotherapist noted the by then eight-month-old had low Late last year, Genetic Services of Western muscle tone, they took her to the local Australia finally identified an incredibly rare paediatrician. mutation on Mackenzie’s MORC2 gene. Jodie was told Mackenzie was one of only “The paediatrician looked at her and did four reported cases in the world with that a few things and then looked at me and mutation. said ‘Right, I need you to get on a plane to PMH,” Jodie said. “I think the whole world “It turns out the mutation Mackenzie has is went ‘boom’. so rare it doesn’t even have a name,” Jodie said. “It doesn’t change anything though – “We ended up in Perth, where they ran the symptoms are pretty much the same.” Researchers from Stanford University, who are some tests. Eventually they told us ‘Your Following Mackenzie’s initial diagnosis, the collaborating on the neuromuscular disorder daughter will never walk’.” family initially experienced shock and grief. study, visited the Institute in May.
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already working well. Then, together we can “Health practitioners haven’t really had it on find solutions to providing health care in a way their radar as a public health issue before that’s culturally meaningful and sustainable.” now, so haven’t been screening for it, and COLLABORATION KEY TO WET families haven’t known that a chronic wet With the help of staff at Telethon Kids cough could be such a big issue.” Kimberley, Ms Laird and Telethon Kids COUGH PREVENTION paediatric lung health researcher Dr André Schultz worked with 40 families as well as local health service providers – including the “Families told us they’d never ever Kimberley Aboriginal Medical Services (KAMS), received any information like this Broome Regional Aboriginal Medical Service before. They said ‘If you’d told us, we (BRAMS), and WA Country Health Service – to would have gone and got help for come up with a strategy to raise awareness the kids’.” Paediatric lung health researcher Pam were often presenting to doctors far and improve recognition and management of Laird has decades of clinical experience too late, when they’d had their wet chronic wet cough and lung disease. - Pam Laird but says her experience working towards cough for a long time and already had improved early diagnosis of chronic lung damage, which could have been They took a two-pronged approach, speaking wet cough and lung disease in Kimberley prevented if they’d been treated earlier.” at length with families to gauge what they Using this information, the researchers shaped Aboriginal children has changed her world view understood about wet cough and lung a comprehensive implementation strategy – particularly around the importance of grass She said culturally appropriate early health; and interviewing health practitioners which they tested for effectiveness in the roots community collaboration. management was key, but to achieve that, to find out what they knew about these Kimberley. The strategy centred around researchers had to work in partnership with problems and what they saw as the barriers to a health information campaign enlisting Prevalence of chronic lung disease in Aboriginal communities. managing affected children. West Coast Eagles rookie and Balgo boy, children is conservatively estimated at 1.5 per Francis Watson, as a cultural ambassador to cent. A wet cough, which is caused by mucus “We found that wet cough in children is feature in radio, television, social media and in the airways, often indicates low grade “As researchers, we can’t go into normalised, both within the medical profession print advertisements as well as community bacterial infection if the cough is present for these communities with a paternalistic and families,” Ms Laird said. appearances and talks. The team also more than four weeks. Such an infection can Western model of medicine and think produced a culturally relevant flip chart about lead to permanent lung damage. “Knowledge about chronic wet cough in lung health and a short animation featured on we can fix the problem.” children is not widespread in the medical YouTube. “Chronic wet cough can lead to really serious - Pam Laird profession, since it was only formally health issues, but it’s often curable – if we find it recognised in 2006 that chronic wet cough in The materials and advertisements, along and manage it early,” Ms Laird said. the absence of other signs or symptoms could with workshops and training sessions for local “You’ve got to establish relationships with represent serious disease. health practitioners, were pushed out during “What we were finding during our visits to the the community first and find out what their Kimberley is children in Aboriginal communities understanding is, what they need and what is
From left: Community researcher David Ougham, Pam Laird, physiotherapist and co-researcher Annie Scanlon, André Schultz, John Jacky (Telethon Kids Kimberley), and community researcher Craig Sampi, at Djarindjin in the Dampier Peninsular
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they have the skills to manage the children. Families are also getting valuable information about healthy lungs and what warning signs to LEADERS BACK WET COUGH PROJECT look out for in the future.
“The benefits have been amazing. Families are In 2014, Kiarna Collard was diagnosed “It could be a lifetime condition for Kiarna empowered with health information so they with bronchiectasis, the chronic lung and has a big impact on her. The message can advocate for their children’s lung health, disease that can develop if wet cough is is that it’s important to get to it when kids medical practitioners are being trained in early untreated. are young, so it doesn’t impact later in life. management of lung disease, local Aboriginal people are being trained in research skills, and Managing the disease is “When children have a we as Telethon Kids researchers are learning traumatic for the now nine- “I’d hate to see someone cough, some parents here directly from local Aboriginal people about how year-old, who must spend long still think it’s just a normal go through the same to do things the local way. periods – up to a month at cold, so it’s a matter of a time – hospitalised in Perth situation as we are.” educating parents that if more than 2,000 kilometres - Belinda Sampi kids have that cough for away from her family in more than four weeks, it’s Dr André Schultz and Pam Laird “It’s a game changer for us and I have Djarindjin, a community of damaging their lungs. come to see that the only way forward 300 people about 170 kilometres north of Broome, on the Dampier Peninsula. “Personally, I think it’s very important to a three-month campaign late 2018, targeted is walking and learning together.” get the message across because I wasn’t at Aboriginal communities and health services - Pam Laird She must also manage the disease in aware when my little one was diagnosed, around the Broome area. between hospital visits, relieving her so I did more research about what it does symptoms with a nebuliser, a portal and what we can do to help. “It was an amazing community effort on a under her arm for medication, and chest shoestring budget, but the results have been “It’s really reiterated that the medicine is only physiotherapy two to three times a day. “It’s good to see this type of education in really positive,” Ms Laird said. going to get you so far: if you don’t have trust our community.” and relationships with families, you are never Mother Belinda Sampi, a Community Although the team is still measuring the going to get anywhere in the long term.” Navigator in Djarindjin, said the trips outcomes, anecdotally doctors are already to hospital were tough for her young reporting an increase in the number of children daughter, who not only missed her family, presenting and being treated, and families including her five brothers, when she was are telling Ms Laird stories of children who had away, but suffered educationally from been unwell for years, receiving treatment and missing so much school. experiencing vastly improved health. WHAT’S Given this personal experience with “It’s so much bigger than the research,” Ms NEXT chronic lung disease, Mrs Sampi was Laird said. “It’s all the knock-on effects. Little Results of a world first-study only too happy to back the Telethon lungs are being made healthy as we go – if we measuring prevalence of chronic Kids Institute’s wet cough program in the find children with lung sickness, we are able wet cough and protracted Kimberley. to tell families to present to their local clinic for bacterial bronchitis (bacterial help. And because we’re doing the project infection of the mucus in the lower She first learned of the program from in collaboration with the local medical clinics, airways or lungs) in four Kimberley Telethon Kids senior researcher and Aboriginal communities will soon wet cough program lead Dr André be published. Preliminary results Schultz, whom she met through Kiarna’s suggest prevalence of chronic wet attendance at regular respiratory clinics cough could be greater than 10 he ran in Broome. per cent in the Kimberley. Keen to educate others in Djarindjin, Mrs Wet cough is caused by mucus in the .The researchers will complete Sampi helped the team launch the wet airway. A wet cough in a child for more their formal evaluation of the cough project in the community. She than four weeks could indicate infection wet cough campaign and its continues to spread the message through in the lungs. Left untreated, over time this impact on practitioners and friends and family, and has urged the local can lead to permanent, life-shortening communities. school to educate students and parents lung damage, including the condition about the need to treat wet cough early. bronchiectasis. The team plans to develop the state’s first teaching models for “I said from the start, I’d like to help to Conservative estimates based on research medical staff to provide culturally educate people around illnesses like wet in central Australia suggest the prevalence appropriate management of cough because I deal with it around my of chronic lung disease in Aboriginal chronic lung disease in Aboriginal little one and I’d hate to see someone go people is 1.5 per cent, however recent children. through the same situation as we are,” Mrs Kiarna Collard with mother Belinda Sampi studies suggest this may be much higher. Sampi said.
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The researchers reviewed child protection data from CHILD REMOVAL DATA the Australian Institute of Health and Welfare (AIHW) from 2012-2016 along with FUELS CASE FOR CHANGE linked data from Western Australian government departments. The resulting elethon Kids Institute research which revealed Aboriginal children are study, published in the journal Child Abuse & 10 times more likely than non-Aboriginal children to be placed in out-of- Neglect, found: Thome care has focused attention on child protection practices, and is feeding a push to improve support for Western Australian families at risk of The number of Aboriginal losing their children. children in out-of-home care increased 21 per cent from 2012 to 2017, while the number of Aboriginal infants – those under the age of Dr Melissa O’Donnell The work, led by award-winning child the State Child Protection Minister to one year – in out-of-home abuse and neglect researcher Dr Melissa discuss the findings, and Dr O’Donnell care increased 17 per cent O’Donnell, confirmed what members of the has been invited to discuss the results at between 2013 and 2016. Aboriginal community had long suspected: a meeting in the UK in September, which “It feels like there’s a lot of momentum, partly as a result of the that Aboriginal children, including babies, are will focus on international rates of infant Coroner’s report into the suicides of 13 young people in the Nationally, 56.6 per 1,000 now more likely than ever to be removed from removal. Kimberley, many of whom were involved with child protection. Aboriginal children were in their families. out-of-home care in 2016, “There’s more and more concern about how our child The researchers have also agreed to hold compared to 46.6 per 1,000 in protection processes support children who are removed, The findings prompted the research team, focus groups for various support services, 2012. By contrast, 5.8 per 1,000 including Telethon Kids Patron Professor Fiona agencies and lawyers, and the findings have as well as how well we support those families to address the non-Aboriginal children were Stanley and leading Aboriginal researcher been used as part of a legal symposium underlying issues that may be putting children at risk.” Dr Rhonda Marriott, of Murdoch University, discussing the lack of legal representation for in out-of-home care in 2016, to call for urgent action to prevent further families facing the removal of children via Dr O’Donnell said the evidence base that might illuminate up only slightly from the 2012 intergenerational trauma. court order. these and related issues, including the child protection rate of 5.4 per 1,000. processes that may disadvantage families from seeking natural Their plea attracted widespread media “The fact that many families don’t have legal justice, was currently inadequate. However, her upcoming Similarly, the number of attention and was followed by a slew of representation and are therefore unable to research, including a review of the Children’s Court’s case files Aboriginal infants in care rose requests from those working with affected contest allegations when orders are sought for infant removals, and a potential review of national child from 24.8 to 29.1 per 1,000 families, who were keen to use the research in the Children’s Court, for example, is a real protection data around removals, aimed to remedy this. between 2013-14 – when the findings as part of efforts to improve child indictment on the system,” Dr O’Donnell said. AIHW began collating data “What we’re trying to do is highlight the systemic issues that protection practices. about children in out-of-home are resulting in this rise in babies being taken from their families. “It’s especially concerning care under the age of one “What people were telling given the growing number Hopefully we can bring all that information together to then year – and 2016. Over the us was the numbers seemed “There’s more and more of ‘until 18’ orders that are start pushing further for the changes that need to happen.” same period, the rates for to be rising, but they didn’t concern about how our child now being sought for babies non-Aboriginal infants rose have the data to prove it,” Dr protection processes support removed at birth, meaning This work was funded by the Australian Research Council and undertaken with the cooperation of the Western Australian from 2.6 to 3 per 1,000. O’Donnell said. children who are removed as those families can never get Government Departments of Health, Communities, Education, well as how well we support their child back.” “This research has and Justice. those families to address the acknowledged that yes, this is Dr O’Donnell said the happening, and has opened underlying issues that may be issues surrounding child the way to ask questions putting children at risk.” protection were complex, WHAT’S about what the government - Dr Melissa O’Donnell but the strong response to is going to do to address this the research showed there NEXT and reduce the number of was a growing appetite for removals, and how can we change. Dr O’Donnell will undertake a review of the WA Children’s Court case files for cases find some solutions.” involving infant removal to identify issues of concern. “Ever since we released the paper everyone Since the paper’s publication in the journal wants to talk to us – it’s just taken on a life of its She has requested access to the National Child Protection Minimum Dataset to find out Child Abuse & Neglect in February, the own,” she said. more about how the various states manage child protection orders, as well as how often researchers have been asked to meet with children are reunited with their families.
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This research is in the pipeline towards translation
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EMBRACING THE MENTAL HEALTH OF OUR CHILDREN AND YOUNG PEOPLE
mbrace – a new research collaboration based at Telethon Kids – will bring a new focus to understanding and improving the mental health Eof children and young people.
Photographs of Fiona’s son, Sam
Fiona’s son Sam was just 17 when he took Sadly, Sam’s story is not an isolated his own life. one. Suicide is the leading cause of death in 15-24 year olds in Western kids at the lowest times in their lives – when children and young people by listening to “When I realised Sam was gone, everything Australia, accounting for one in three they’re experiencing trauma, depression, their voices and evaluating innovative ways stopped. It was like my world had ended,” deaths in young people. anxiety, or thoughts of suicide or self-harm. of helping them,” Dr Lin said. Fiona said. “Never in a million years did I think this would happen. He was always so happy. Now a new collaboration based at Telethon Kids Co-lead, Associate Professor Ashleigh “We’ll then promote these solutions to mental – called Embrace – will become the first research Lin, said Embrace would bring together health service providers and policymakers to “I look back and I look for signs in his eyes or centre in the state devoted to the mental health clinicians, service providers and government create real and effective change.” some sign that he was sad, but I can’t see it. Sam of children and young people aged 0-25. stakeholders to tackle the issue of mental wasn’t bullied, he wasn’t on drugs, he hadn’t split health with a collaborative, Dr Lin said mental health was a up with his girlfriend. It’s so confusing because Led by some of Australia’s top mental health holistic approach. complex issue that was still not you don’t understand.” researchers, Embrace will find new ways to help fully understood. “Embrace will work at It would also seek to prevent crisis before it starts, by giving deeply understanding the “That’s why research is so kids and communities the tools experiences and needs important,” she said. “It’s how they need to better cope of children and young we come to understand where with challenges they face, people by listening to their problems originate, create new including bullying, unsafe voices and evaluating ways of helping vulnerable kids, cyber behaviours, and stressful prove which therapies work innovative ways of helping experiences. best, make sure kids get the “Embrace will work towards them.” right support, and discover how deeply understanding the - Dr Ashleigh Lin best they thrive in their families, experiences and needs of schools and communities.”
By years Suicide It is estimated 15 of age, is the leading 1 in 12 that more than % cause of death in Australian of year young people 41,000 50 15-24 olds aged teens aged lifetime mental in WA, illnesses accounting for 12-17 12-17 have already 1 in 3 deaths have attempt suicide begun in young people self-harmed each year
Dr Ashleigh Lin and Fiona Bailey
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It was essential, she said, to find new ways to The #SupportEmbrace Campaign – Embrace Ambassadors Maggie Dent and Nic Naitanui led a prevent and treat mental health issues in order campaign to rally the community behind Embrace, raising both awareness and donations for mental to keep children and young people on the right health research. The campaign encourages people to post a photo of their younger self on social trajectory, so they could develop into happy and media to show today’s young people that you know what it feels like to go through tough times. productive adults.
“Embrace will find answers to our most pressing mental health problems, and will push boundaries to not only create a more effective mental health system, but make a genuine difference for those vulnerable to suicide, “Every single young person is self-harm, trauma, depression and anxiety.” struggling and vulnerable around the things that knock them down. We really have to look at: what are the things that genuinely support our teens? How do we support them in school journeys? How do we support them at a community level? How do we support them Embrace has been supported by the Gift of in families? I really believe today’s Giving donors at the 2018 Lexus Ball for Telethon. Professor Helen Milroy and Associate Professor Ashleigh Lin world is giving our young people on that adolescent journey more challenges on so many levels and we need to work out how do we create the safe base around them, so they can come out the other end.” - Parenting author and Embrace How is unique? Our Values ambassador Maggie Dent
is WA’s first and only research centre devoted to the mental health of children and young people aged 0-25 years. The team aims to develop early intervention strategies in childhood to operates according prevent mental health crises later in life to the following values:
values the diversity of our community and seeks individualised “We need to prioritise solutions to help every young person Health Equity mental health. The longer and their families, especially those most we take, the more lives are vulnerable lost and that’s the reality of Cultivating positive mental it. We need to fight as soon as we can and get as much is driven by the needs of health and wellbeing help into it as we can. Let’s young people and families in WA all rally behind the Embrace team to help give kids a A holistic approach is deeply connected in the brighter future.” WA community. Based at Telethon -.AFL player and Embrace Kids, its research will involve young ambassador Nic Naitanui people directly and be conducted in Sustainable partnership with local mental health service providers, schools, community groups, and government departments, to address the needs of our WA Empowerment community and put everything we learn into action to help WA kids now
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Putting parents BUSTING MYTHS at the fore
It was a conversation between AROUND STILLBIRTH Telethon Kids Institute researcher Brad Farrant and University of South Australia PhD student Danielle Pollock, at the International Stillbirth Alliance Conference in Scotland last year, that gave rise to the group Telethon Kids Institute researchers Dr Shepherd has teamed with the believe a public education campaign, Institute’s Dr Brad Farrant to lead further SPEAR: Stillbirth Parents, like the one around Sudden Infant Death research on the topic. Dr Farrant and his Educators, Awareness advocates Syndrome (SIDS), would help to reduce the wife Jaime are parents to daughter Kaya, and Researchers. number of babies who are stillborn. who died unexpectedly during labour in 2011. Brad, Jaime and Djuna The pair joined up with Telethon Kids researcher Dr Carrington Research shows that deaths from Dr Farrant said he believed Kaya’s Shepherd, Claire Foord, founder of SIDS in Australia dropped from 500 in death – from a combination of charity Still Aware, and Associate 1989 to 113 cases in 2015, following “It’s still a very infection and intrauterine growth “The data needs to be better. Placental dysfunction is Professor Jane Warland, of the the ‘reduce the risks campaign’ stigmatised restriction – was among those that one of the biggest risk factors for stillbirth, yet we don’t School of Nursing and Midwifery linking babies’ face-down sleep space. The public were preventable. systematically collect data about it. We’d like to see at the University of South Australia, position to increased risk of SIDS. understanding more information collected through autopsy processes to form the group, which aims “It’s still a very stigmatised space,” around stillbirth is and we’d like to see that happen systematically.” to ensure that the voices of Telethon Kids Institute researcher Dr Farrant said. “The public quite low, with a lot - Dr Carrington Shepherd bereaved parents are heard Carrington Shepherd said that understanding around stillbirth is quite in stillbirth policy, research and nationally, six babies were stillborn of myths.” low, with a lot of myths. ultimately practice. each day and, like SIDS, some of - Dr Brad Farrant those deaths were preventable. “There’s much work to be done in Dr Farrant said a big focus would be having a national Dr Farrant, Danielle Pollock, Claire There was a ‘tragic over- public health education to create an Foord and Jane Warland have all representation’ of Aboriginal people in those environment where we are able to have adult conversation about stillbirth the way the community had previously had around SIDS. personally experienced stillbirth in figures. conversations around what we need to do to their lives, with their experiences reduce stillbirth.” as bereaved parents a key driver “But there’s a real sense of fatalism that stillbirth “The parallels with SIDS are instructive,” he said. “One of the key factors in the SIDS campaign was raising public awareness as they seek to change the is unavoidable, that it’s not preventable – and The Farrants gave evidence to the Australian conversation around stillbirth. that’s not true,” Dr Shepherd said. Senate Select Committee on Stillbirth Research around sleeping position, and maternal sleeping position has and Education in December 2018, and Dr been identified as a factor in stillbirth – so there are strong Dr Farrant said that for him, the “However, we don’t fully understand which Farrant said the time was now right, in the wake parallels. most important function of the deaths are avoidable and which aren’t, and of that inquiry, to ramp up research. group – which was still in its early this really hampers our work in this space.” “The SIDS campaign was very effective in not just raising days – was public education. Accordingly, he and Dr Shepherd are awareness and dispelling myths but in getting people’s developing a small team of researchers interest. “Not long ago, it was thought the at Telethon Kids and nurturing broader best thing for bereaved parents was collaborations with the University of South “We need to do what we can to get people talking about to have the baby taken away and Australia and the stillbirth charity Still Aware. stillbirth – this could be one of the most important things we do never spoken of again,” he said. Together they have formed the Stillbirth in terms of prevention.” Parents, Educators, Awareness advocates and “Thankfully, through a concerted Researchers (SPEAR) collaboration. advocacy and education campaign this is no longer the Dr Shepherd said improving available data was case. Unfortunately there is a crucial first step in helping researchers. WHAT’S still a lot of stigma and lack of NEXT understanding about stillbirth, “At the moment we are all coming from and this is why public education is different angles; we have data boffins, such a vital component of stillbirth clinical researchers, and scientists all working A national public education campaign. prevention. separately with their part of the picture, but “Conversations need to happen if we could combine that we’d get a clearer .A nationally co-ordinated approach to data to educate the public, and it’s picture of what needs to be done,” he said. collection. important that the voices of “Then, we’d like to have that information linked .Ramping up examination of placental dysfunction bereaved parents are ‘front and Dr Carrington Shepherd to other administrative data and available to as one of the big risks in stillbirth. centre’ of those conversations.” third party researchers like us.”
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A 1970s initiative dreamt up by former The new research showed there was n 2014 Professor Steve Zubrick was one of nine chief investigators who were Telethon Kids Director Professor Fiona no evidence to support the notion that Stanley, which saw midwives begin waiting was beneficial, allowing doctors awarded nearly $28 million in funding to create the Australian Research collecting key data about all births in to provide clearer advice and providing Council Centre of Excellence for Children and Families Over the Life Course, Western Australia, has been crucial to new reassurance for women who intentionally I of which he is Deputy Director. Five years on, Telethon Kids-led studies findings about stillbirth and pregnancy or unexpectedly became pregnant again published in the prestigious international soon after experiencing stillbirth. emerging from the collaborative research centre – set up to investigate journal Lancet. and prevent the transmission of deep and persistent disadvantage across “I was surprised that Head of Child Disability such a high percentage generations – are leading to better outcomes for kids and their families. at Telethon Kids, of women did conceive Associate Professor relatively soon after, and Helen Leonard, is part I was very happy about of a West Australian the fact that conceiving perinatal epidemiology relatively soon had no Professor Zubrick and Dr Kirsten Hancock Dr Hancock’s work has focused group, some of whose worse impact on the are among several Telethon Kids predominantly on what helps and members collaborated outcome of the next researchers working through the Life hinders children to do their best at school, with researchers in pregnancy, so it’s a Course Centre to tackle intergenerational including family background factors and Finland and Norway for really good news story,” disadvantage and identify ways all kids can the way these can affect what children have the world’s first large- Associate Professor get a better start to life. in their ‘backpacks’ when they arrive at the scale study into the link Leonard said. school gate. between stillbirth and subsequent pregnancy. She said a letter from “My work has particularly targeted student a mother, who was absenteeism, including the different reasons The study involved looking to conceive students miss school and the impact of those 14,452 births, including again after a stillbirth reasons on NAPLAN outcomes,” Dr Hancock 3,521 from Western and had read the said. Australia. The Australian research, summed up data was collected Associate Professor Helen Leonard the significance of the In one of her most recent studies, Dr Hancock from 1980-2015 through findings. led a team, including Professor Zubrick, that the Western Australian collated data on entire cohorts of Western Midwives Notification System, under which “Women in my situation usually never Australian children to show how different types midwives began recording information get any answers as to why they lost their of absences related to NAPLAN outcomes. about mothers’ pregnancies and births pregnancy, and it seems like such a murky Surprisingly, they found in-term holidays have from 1975 onwards. and difficult area that nobody wants to little impact on NAPLAN scores. Rather, it’s touch,” the letter read. unexplained absences schools need to worry “Now that data collection about. is absolutely routine, that “So, there is little to no information has been research or information for us Professor Zubrick said the results showed it “Now that data collection sentinel to a lot of studies women who want to make wasn’t just the number of days missed that including this one,” Associate is absolutely routine, that an informed decision about caused students to fall behind, but the type of Professor Leonard said. information has been how to proceed with our lives absences. sentinel to a lot of studies and our fertility. She said while women including this one.” “Unexplained absences account for about one were generally advised - Associate Professor Helen Leonard “This gives me hope that third of all absences in the study population by their doctors that it was proceeding with a future and were associated with the largest best to wait at least two pregnancy when I feel academic gaps,” he said. years before conceiving ready will be safe (regarding again after a live birth (sooner after a concerns on inter pregnancy interval) “Vacations during the school term were miscarriage), guidelines on the appropriate and will help to ease my anxiety moving generally not associated with student interpregnancy interval following a stillbirth forward.” achievement, but we found that children were vague. Professor Steve Zubrick and Dr Kirsten Hancock
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with unexplained absences had a greater risk of falling behind.” “It’s an important In other outcomes, the Life Course discovery that high- Centre’s 2018 annual report showed the Dr Hancock said the group most achieving students relative rate of poverty has remained affected by absences was high- are the ones stubbornly unchanged in recent years, achieving students, whereas the hovering at around 10 per cent of most affected by estimated effects of absence on Australians living below the poverty line. achievement were considerably absences, and this lower for low-achieving students includes legitimate Professor Zubrick said about 700,000 – raising questions about what absences, like Australians lived in entrenched students were missing out on when illness.” disadvantage (defined as poverty for they were away from school. - Dr Kirsten Hancock four or more years), with the Centre’s research showing that generally, “It’s an important discovery that as children experienced more high-achieving students are the ones most disadvantages, they found it much harder to affected by absences, and this includes catch up to their more advantaged peers. legitimate absences, like illness,” Dr Hancock said. Amongst other research, Telethon Kids researchers working through the Centre have “Attendance policies often focus on examined how combinations of different disadvantaged students, and these findings types of disadvantages contribute to the way show that attending school is important for all children develop language skills over time. students. But we also need to know why low- achieving students are not falling further behind when they’re absent.” “Our studies have been important for government departments, Dr Hancock said the next step was translating including those in Western Australia, the research findings into practical solutions for Life Course Centre staff and students from the Universities of Western Australia, Queensland, Melbourne, and Sydney met for a research because of the information they retreat at The Vines in Perth, in May. schools and students. provide on the proportion of families experiencing different types of “Although findings are still being disseminated, challenges, and where different this research has led to us working with student support services to look at ways schools can policy supports are needed.” encourage better attendance and reduce - Professor Steve Zubrick WHAT’S unexplained absences,” Dr Hancock said. NEXT
Dr Hancock will discuss absence patterns in professional development workshops for school The Life Course Centre is a national principals. The workshops will help research centre which aims to tackle principals work with their own school the problem of deep and persistent data, pinpoint problem areas, and disadvantage within families and across generate strategies appropriate for generations, and to translate research their school. findings into practical solutions.
Along with CoLab, the Life Course Established in 2014, the Centre is a multi- Centre team is working with several site collaboration between The University government departments to find of Western Australia and universities in better ways of designing services for Queensland, Melbourne and Sydney, young children and their families. along with seven corporate partners and three state governments.
It has collaborative links with national and international partners, including research institutions in North America, Europe, and Asia.
Dr Kirsten Hancock
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ENERGY DRINKS NOT OK FOR KIDS
Popular energy drink n the largest study of its type in Australia, Telethon Kids Institute researchers brands include have found more than half of young people who consumed energy drinks Red Bull, Monster, Isuffered negative health effects – leading the Institute to call for a ban on Mother, Rockstar sales of the products to children under the age of 18. and V
Half the young people surveyed had tried an The Amped Up study, led by public health Existing research shows energy drinks energy drink, with researcher Dr Gina Trapp, surveyed 3,688 have been connected to cardiovascular Western Australian high school students and neurological issues such as seizures, 23.4 per cent about their energy drink use. psychosis and cardiac arrest. consuming them monthly,
Preliminary findings showed more than 50 per cent There is also evidence linking energy drink 19.2 per cent of those surveyed had tried an energy drink, with consumption in children and young people consuming them weekly 55.4 per cent of that group reporting they had to substance use and a range of behavioural and experienced adverse outcomes – some serious problems. 2 per cent enough to require medical assistance. consuming them Dr Trapp said young people who had tried every day According to the survey, 24.6 per cent had energy drinks reported confusion surrounding their experienced heart palpitations, 24.5 per cent ingredients and appropriate serving sizes. The average age of had had trouble sleeping or insomnia, 24.3 per cent had headaches, and 24 per cent had upset “Although labels are legally required to carry firstconsuming stomachs. warnings and other information, they’re not easily an energy drink seen or understood,” she said. was 10 The findings were included in a Telethon Kids submission to the State Government’s Select Serving sizes were also a problem, with 320mg per Committee on Personal Choice and Community litre the maximum amount of caffeine permitted % Safety in October 2018. — unless the product was called a ‘dietary 55.4 supplement’. of young people “We are advocating for a ban on the sale of who had consumed an energy drinks to children under 18 years of age “Labels must also state the maximum energy drink said they due to negative impacts they can have on recommended daily amount is 500ml per day, experienced at least health,” Dr Trapp said. however energy drinks are available in sizes larger than this,” Dr Trapp said. one adverse “Children and parents are largely unaware of reaction these health risks, despite packaging stating the Data from the Australian Poisons Information drinks are not recommended for consumption for Centre shows a five-fold increase in calls regarding Dr Gina Trapp children. energy drinks, with the most common symptoms palpitations, agitation, dizziness and gastro- “They provide a potent source of caffeine and intestinal upset, and at least 128 people requiring can contain high levels of sugar, sodium and hospitalisation. herbal stimulants.” An initial focus group, which led to the state-wide WHAT’S Dr Trapp said the growth in popularity of these survey, found adolescents consumed energy drinks drinks was concerning, with annual sales in to conform with peers and to stay awake and play NEXT Australia increasing more than 600 per cent video games, complete assignments or play sport. between 2001 and 2012. The research team is hoping to secure funding to run a parent-based intervention program, Full findings from the study will be published later educating parents and caregivers on the dangers of energy drink consumption by Other peak health bodies, such as the Australian this year. children. Dental Association and Australian Obesity Policy Coalition, support a ban. The team will also be pushing for changes to labelling, making warning labels and ingredients clearer and easier to see.
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PERSONALISED ANALYTICS PROPEL RARE DISEASE DIAGNOSES
elethon Kids Institute researchers are at the forefront of rapid improvements in the diagnosis of rare diseases, with the Institute’s TGenetics and Rare Disease program using powerful new tools to decipher conditions that until now have defied understanding.
Just six years ago, researchers – including Dr Lassmann said that instead of treating rare diseases expert Professor Gareth each child as a ‘blank canvas’, the Baynam and computational scientist Timo researchers undertook a targeted analysis Lassmann – were far less confident about of each patient’s information, using medical diagnosing with certainty a child presenting indicators the clinical team had identified. with a complex array of severe and unusual symptoms. “The main activity here is phenotyping: very accurate descriptions of what’s wrong with the But within a very short period, those odds have child,” Dr Lassmann said. dramatically risen. “We use that information as a starting point to look Dr Timo Lassmann and team for disease genes that we know to be associated with those phenotypes. We then apply large “If you’d come to me in 2013 and asked, genomics data and build predictor models that Both said it was an important article, shining a “The goal is deliberately ambitious, but so too what are the chances of a child with interrogate that patient’s genome in a way that’s light on rare disease diagnosis in a high impact have been previous targets – and they have a combination of severe and unusual guided by the phenotype. way to help galvanise researchers worldwide been exceeded ahead of time,” Professor characteristics having a confirmed around a common mission. Baynam said. diagnosis, I’d have said nine per cent. “The difference, on the computation side, is that other approaches treat all the patients the The article’s authors, including Professor In 15 months it went to 30 per cent – same, using one machine-learning method to Baynam and Dr Lassmann, are part of tripling. find disease-causing variants. What we do is build an international taskforce formed to help machine-learning algorithms for each patient. advance diagnosis for children with unsolved medical mystery conditions. The taskforce “Then we created the Undiagnosed is part of the International Rare Diseases Disease Program and took the diagnostic This research is supported by the Research Consortium – a global collaborative Feilman Foundation and McCusker rate from 30 per cent to 55 per cent – all “I call this ‘personalised analytics’. It’s a founded in 2011 which aims, by 2027, to Charitable Foundation. in a few years.” new thing we do – build an entire analysis create the means to diagnose all people - Professor Gareth Baynam pipeline around what’s wrong with that living with a rare disease within one year of particular child – and it seems to be coming to medical attention. better than treating everyone the same.” Professor Baynam, Clinical Geneticist and an - Dr Timo Lassmann Honorary Research Fellow at Telethon Kids, said rapid improvements in the diagnosis of rare WHAT’S diseases were set to continue globally, with the Institute at the forefront of that wave. “As we go forward we want to merge this as much NEXT as possible, to make use of all the information we Professor Baynam works with the Institute’s Genetic have, whether it’s genomics, transcriptomics or .Incorporating 3D facial analysis approaches together with CliniFace – combining the faces and Rare Diseases Program – a critical part of something a clinician noticed.” and voices of children and families to unlock answers for children with rare disorders and the Undiagnosed Disease Program, which brings improve their health. together a multidisciplinary team of clinicians Recently, Professor Baynam and Dr Lassmann and a team of computational scientists led by Dr collaborated with international colleagues to .Increasing health equity and cultural safety through partnering with the voice (language) of Lassmann, who are pursuing a unique approach write a commentary published in the journal Cell, Aboriginal children and families, via the UNESCO-endorsed Life Languages initiative – part of that treats every patient as an individual. discussing technological advances in the field that the United Nations Year of Indigenous Languages. will help in the future. 108 | TELETHON KIDS INSTITUTE IMPACT REPORT 2019 | 109 IN THE PIPELINE
ENDING THE CYCLE OF BIG DATA SCIENCE MAY HELP ‘NOT KNOWING’ UNLOCK SIMPLE TEST FOR ASTHMA
aediatric respiratory physician and Telethon Kids researcher André Schultz has had to wait more than a decade to test out a simple idea Pwhich – if promising early results are any guide – could revolutionise There are 63,000 children living with a “You feel incredibly isolated, but once the way asthma is diagnosed. The answer could lie in the study of rare disease in Western Australia alone. you know the answer and connect metabolites – the unique chemical fingerprints left behind by cellular to people with the same experience, processes in the body. While previously many would have gone you have a community and a shared undiagnosed, rapid progress in rare experience and clarity for the future. disease diagnosis in recent years means more than half can now look forward When Dr Schultz first heard about the There are currently no clinically viable to knowing what the condition is that’s science of metabolomics 11 years ago, methods to accurately diagnose asthma made them ill or limited their abilities. “That removal of isolation is the most powerful thing we do. he was intrigued by the potential it held before six years of age, leaving doctors for unlocking the mechanisms behind unable to predict which children will stop Professor Gareth Baynam said phenotype- People often feel a need to know asthma. wheezing naturally and which will go on to informed genomic sequencing, for what caused this and to connect have chronic issues. As a result, many children example, had delivered a diagnosis for with others in Despite being the most common long-term are treated with asthma medication as a dozens of children in WA – including some same situation.” medical condition in Australian children, asthma precaution, even if they may not need it; while who were amongst only a handful of remains poorly understood. It’s often preceded others who would benefit from treatment miss people in the world with their condition. - Professor Gareth Baynam by a recurrent wheeze in babies and small out. children – but not all children with wheeze go on “These diagnoses have altered medical to develop asthma. “There’s a real need to provide clarity as early as and surgical treatment and given insights possible in a child’s life,” Dr Schultz said. into the potential to develop new therapies, drugs or treatments,” Professor Baynam said.
“It also gives us clarity to investigate further things like metabolomics; from a simple wee sample, for example, we can look for clues about how the body is metabolising things and what that means for potential new medicines to help.”
Perhaps most importantly, however, the ‘not knowing’ had ended for many children and their families.
“Imagine going through life circulating around the health system with multiple health issues and you don’t have a clue what’s causing it or a name for it. How do you speak to the school about that or to doctors or family and friends?” - Professor Gareth Baynam
Professor Gareth Baynam
Dr André Schultz
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“If we could predict whether or not a recurrent didn’t have the scientific track record to get the “People go in and out of these groups wheezer really has asthma, we could avoid funding to do anything. as they get older but we have no way of unnecessarily exposing children to medications figuring that out yet. We hope the MAP WHAT’S which can have side effects, and ensure “Also, network biology, or the science of study will give us answers and help us NEXT we capture those who really do need this analysing big data – which you need to be predict what their trajectory might be over treatment.” able to process the thousands of metabolites the lifetime.” from each patient – hasn’t been possible until The team expects to After hearing about fairly recently.” Early results from a pilot study lin 2018 send further samples for metabolomics in 2008, Dr revealed what appeared to be clear metabolomic analysis over the Schultz wondered whether Last year Dr Schultz and a team differences between school-aged children next few months. If the results high-powered analysis of “The idea was that, including research assistant who were healthy or had different patterns are as positive as those from the the metabolites in children’s through a simple, non- Sherlynn Ang began recruiting pre- of asthma and wheeze. pilot study, they hope to secure urine might deliver that invasive urine test, school and school-aged children funding from the National Health and Medical Research predictability, by identifying tell- perhaps we could with and without asthma to the Council to take the study long- tale metabolomic signatures understand and predict Metabolomic Asthma Profile (MAP) indicative of underlying disease. study. They’ve signed up more than “We were surprised how great term. asthma much earlier in a 200 families, who have responded those results looked. For me to see a .The metabolomic approach “The idea was that, through a child’s life.” so enthusiastically that the team difference between healthy school- using urine samples has proven simple, non-invasive urine test, - Dr André Schultz now hope to be able to follow the aged children, and healthy school- so participant-friendly that perhaps we could understand children long-term. aged children who previously had the team hopes to extend and predict asthma much earlier asthma or wheeze but now don’t, for the model into other areas of in a child’s life,” Dr Schultz said. “The thing with asthma is it often comes and example, is amazing.” respiratory research. Ultimately, goes,” Dr Schultz said. “Those with pre-school - Dr André Schultz Dr Schultz hopes the results will “I’ve been wanting to test this theory since I first age asthma may not have school-aged lead to the development of heard about metabolomics, but we just didn’t asthma, and may have adolescent age asthma simple, non-invasive dipsticks have the expertise in Perth at the time and I – or they might not. He said part of the reason for the study’s that can help diagnose success so far was that it wasn’t especially different kinds of lung health onerous on participants, and families problems. understood the importance of what the team was trying to accomplish.
“When I designed this study I was dead keen on getting three samples at different time intervals, and I knew we weren’t going to get those if we went in there and made it painful or difficult for families,” Dr Schultz said. “So, because I have little kids of my own, it’s a really kind, non-invasive study. “We’re taking some wee, doing some lung function testing, and the worst thing we do is once-off skin prick testing.
“As a result, we’ve had excellent retention rates and really good follow-up, and we’re embarking on a long-term retention and engagement strategy.
“I think families, like doctors, can understand the challenge of trying to predict, diagnose and treat asthma properly in young children. They really get it. They want to see how it turns out and we are keen to tell them.”
The MAP study is funded by the Telethon- Perth Children’s Hospital Research Fund, established by the WA Department of Health and Channel 7 Telethon Trust, and is a collaboration between the Telethon Kids Institute, Perth Children’s Hospital, Murdoch University and Edith Cowan University. Sherlynn Ang
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ENDING DEADLY HEART DISEASE FINALLY WITHIN OUR SIGHTS
t’s been a huge year for those working to eliminate rheumatic heart disease (RHD), with breakthroughs including $35 million in funding to develop a Strep A vaccine, a bipartisan commitment to tackle the disease, and a I From left: Associate national roadmap for action combining to mean we’ve never been better Professor Asha Bowen, Mr placed to end RHD, once and for all. Glenn Pearson, the Hon Ken Wyatt AM, MP, Miss Tenaya Bell, Ms Vicki O’Donnell, Ms Pat Turner AM, Professor Jonathan Carapetis AM, Professor Andrew Steer
Rheumatic heart disease (RHD) is a have come together with one voice to preventable disease that should no longer say: RHD needs to end, and this is how,” world towards developing a safe, globally exist in a country as wealthy as Australia. Professor Carapetis said. effective and affordable Strep A vaccine Yet it does, affecting Aboriginal and Torres – and this funding will continue to position Strait Islander children at some of the highest “We know what is needed to end RHD in WHAT’S Australia as a leader in this space.” rates in the world. Australia: guaranteed Aboriginal leadership; targets to track progress; an RHD NEXT Starting from a Strep A infection of roadmap to bring together all relevant “In my 25 years “Not only will a Strep A vaccine help the skin or throat, when left untreated government departments and us end RHD, it has the potential to RHD Endgame Report: Due for RHD can be fatal. Even with careful working on RHD, stakeholders; funding for community- release in late 2019, this critical save over half a million lives globally management – usually monthly I have never felt led activities; and investment in synthesis of evidence and antibiotic injections for at least ten more confident research. This past year, END RHD has by preventing other Strep A-related policy analysis will provide a years – it is still life-shortening. In fact, in that the end is seen huge progress towards achieving diseases as well.” comprehensive, fully-costed guide Western Australia’s Kimberley region, in sight for this these goals.” - Professor Carapetis to ending RHD in Australia by 2031. the average age of death from those disease, which for RHD Roadmap: Currently being living with the disease is just 41 years too long has been In late 2018, END RHD was With the release of the RHD Endgame Strategy reviewed by the Australian Health old. a national shame commissioned to write a draft RHD Roadmap by the Commonwealth – bringing together more than five years of Ministers’ Advisory Council (AHMAC), But with a commitment from both for Australia.” Department of Health. Tabled at the collaborative, community-driven research the RHD Roadmap outlines the top- major political parties, a global - Professor Carapetis Council of Australian Governments from the End Rheumatic Heart Disease Centre level priorities of work needed to mandate from the World Health (COAG) Health Council meeting of Research Excellence (END RHD CRE) – eliminate RHD. It will be reported Assembly to prioritise ending the in March this year, it has now due at the end of this year as well, Professor back to the COAG Health Council in disease globally, the beginnings of a national been progressed to the Australian Health Carapetis said there would be no unanswered November. RHD Roadmap, and a Strep A vaccine in the Ministers’ Advisory Council (AHMAC), to be questions about what is needed to eliminate RHD in Australia. Strep A Vaccine: Together with key works, Telethon Kids Director and leading reported back to the COAG Health Council in partners such as Murdoch Children’s RHD researcher Professor Jonathan Carapetis November. Research Institute, work will begin believes the idea of ending the disease is finally “We have the foundations to to accelerate an existing Strep A starting to become a reality. In February 2019, further progress towards vaccine candidate into a clinical eliminate this disease: Aboriginal achieving the priority asks was made when trial within five years. “In my 25 years working on RHD, I have never $35 million in federal funding was awarded to leadership, growing political will, and felt more confident that the end is in sight Telethon Kids to lead a national consortium to world-class research. With all of this on for this disease, which for too long has been develop a Strep A vaccine – a development our side, there is absolutely no reason a national shame for Australia,” Professor Professor Carapetis described as an absolute Carapetis said. game-changer in the fight to end RHD. why we can’t consign this disease to the history books once and for all.” Driving the momentum is END RHD, an alliance “Not only will a Strep A vaccine help us end - Professor Carapetis of peak bodies of which Telethon Kids is a RHD, it has the potential to save over half a The Bupa Foundation supports the END founding member and Professor Carapetis is million lives globally by preventing other Strep RHD Communities Project – a community- Co-Chair. A-related diseases as well,” he said. led, research-backed approach to tackling rheumatic heart disease in remote “What’s exciting about END RHD is that it’s the “As part of the Global Strep A Vaccine Aboriginal Communities – which is a critical first time that the research, advocacy, and Consortium we have been working piece of work informing the development of Aboriginal Community Controlled Health sectors collaboratively with organisations across the the RHD Endgame Strategy.
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Timeline FINDING ANSWERS FOR TENAYA: FROM A A year in review SORE THROAT TO OPEN-HEART SURGERY May An Australian-sponsored World Health Assembly resolution is 2018 passed, calling for global action to tackle rheumatic heart disease. Representatives from END RHD attend the historic event in Geneva. When Katrina Walley took her seven-year- The surgery to repair Tenaya’s heart valve old daughter Tenaya to the local emergency went well and after two months in hospital, June Representatives from the END RHD CRE attend a World Health department for the fourth time within a month, she was finally discharged. However, just a 2018 Organisation consultation meeting in London discussing global she was determined she wouldn’t be leaving few days later, she had to be rushed back without answers. into surgery to drain excess blood pooling efforts to develop a Strep A vaccine. around her heart. Tenaya had been complaining of a sore October Telethon Kids is awarded $950,000 by the Federal Government to throat, stomach pains, and breathlessness. At Two months on from two rounds of open- 2018 work in conjunction with the Kimberley Aboriginal Medical Service night-time, she found it hard to lie down flat heart surgery, and Tenaya and her family (KAMS) and Nirrumbuk Environmental & Health Services to establish to sleep – a sign of heart failure. are in the process of relocating permanently a new END RHD Community in Western Australia. to Perth so she can be closer to specialist “I knew something wasn’t right,” Katrina said. medical care. Every month, Tenaya must “We got to the hospital around 8 or 9pm. At have a penicillin injection to prevent her November END RHD co-hosts a parliamentary breakfast with the Snow this point, her oxygen levels started dropping, condition getting worse, and Katrina says 2018 Foundation, where the Hon Ken Wyatt MP, Minister for Indigenous so she was put on oxygen.” Tenaya is struggling to understand that she Health, and the Hon Warren Snowdon MP, Shadow Assistant will need to have them until she is at least 21. Minister for Indigenous Health, commit to making efforts to end By 11pm, they were being flown from their rheumatic heart disease a priority. home in rural Western Australia to Perth “She doesn’t like having them, but she’ll go to Children’s Hospital via the Royal Flying Doctor get them done – but then she starts crying,” Service. On arrival Tenaya was rushed to the she said. “After the injection she is always in December The END RHD CRE publishes The Cost of Inaction on Rheumatic intensive care unit (ICU) and put on a life- pain for two days.” 2018 Heart Disease, which predicts more than 10,000 Aboriginal and support machine, where she would remain Torres Strait Islander children will develop RHD or ARF by 2031 unless for the next two weeks. In February this year, Tenaya and her urgent action is taken. family attended a press conference where the Hon Ken Wyatt AM, MP awarded $35 “I will never forget any of that – million in funding to Telethon Kids to lead The Hon Greg Hunt MP, Minister for Health, and The Hon Ken Wyatt February seeing my baby in the ICU.” the development of a Strep A vaccine that MP, Minister for Indigenous Health, award Telethon Kids Institute $35 2019 - Katrina Walley would prevent children developing RHD. The million to lead a national consortium to develop a Strep A vaccine. announcement made national news, and Tenaya was the star. At the Council of Australian Governments Health Council Meeting, Katrina was told Tenaya’s heart was failing March ministers commit to ending RHD and refer the RHD Roadmap to the as a result of rheumatic heart disease (RHD), “She was a bit excited, watching and telling and that the little girl urgently needed surgery everybody,” Katrina said. “Teachers at the Australian Health Minister’s Advisory Council (AHMAC) for review, to 2019 to have one of her heart valves repaired. local school said that her cousins were saying be reported back to the COAG Health Council in November 2019. ‘we saw Tenaya on the news, she’s famous “I was in shock at first. I just went and sat in now!’” The Wellcome Trust funds the Global Strep A Vaccine Consortium one of the rooms by myself,” Katrina said. May to mobilise and coordinate global collaborative efforts to develop Although a vaccine 2019 a Strep A vaccine. Tenaya was in hospital won’t help kids like for a month before she Tenaya who are already was strong enough to living with rheumatic have the surgery. She heart disease, Katrina Without urgent action, it was predicted hated being away from said it was special What is RHD? WHO HAS IT? more Aboriginal and her school, friends, and to be part of an than 10,000 Torres Strait family, and was scared announcement for Rheumatic heart disease (RHD) In late 2018, the END RHD Islander people starts with a Strep A infection CRE released The Cost of about having to have something that has the surgery. potential to stop kids in of the throat or skin. When left Inaction on Rheumatic would develop the disease or its precursor, untreated, the infection can lead Heart Disease which acute rheumatic fever, by 2031. the future developing to acute rheumatic fever (ARF), found: Of these people: “By the second month, the disease. which causes sore joints, rash, There were more than she started to cry every fevers, and heart inflammation. 1,370 563 $317 4,500 Aboriginal or will need time she saw a nurse,” Katrina said. “[On the “It was good knowing there is something While the other symptoms of ARF with RHD million Torres Strait Islander will be spent on day of the surgery] she was crying when they that will make it easier to stop it,” she said. go away, the heart damage people in Australia living will die put the oxygen tubes in, but when she was “Research is really important so kids like remains – and this is known as heart surgery with RHD or its precursor, asleep, I felt better that she was resting and Tenaya and their parents won’t have to go rheumatic heart disease medical care acute rheumatic fever that something was going to get done.” through this.”
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GUIDELINES STRUGGLE TO KEEP PACE WITH TECHNOLOGY
n ORIGINS study aims to find out more about family screen habits to help provide clearer, more realistic advice about how to make the Amost of rapidly evolving technology, while avoiding the drawbacks.
Today’s parents are the first generation “Parents are confused around to raise children who have access management of digital technology, with to mobile screen technologies like education policy calling for increased smartphones and tablets almost as soon use of technology to support learning, and as they are born – and many are struggling public health policy calling for no screens for as they try to figure out how to manage this very young children and very limited use by brave new world. slightly older young children,” Professor Silva said. Australian guidelines recommend digital media use should be avoided by children under the age of two years and limited to “The recommendations haven’t kept less than 60 minutes per day for children up with wide and easy use of mobile aged two to five years, yet the evidence touchscreen devices, and are based suggests children not only start engaging with screens at much younger ages than this, but around more traditional technology dramatically exceed the suggested limits. like television and desktop computers.” Recent data revealed the majority of young - Professor Desiree Silva Australian children spend an estimated 22 hours a week on screens, compared to just six hours a week playing outside. Professor Silva said it was important to understand more about family use and views ORIGINS Project co-director Professor about mobile technology devices, including Desiree Silva said the early use of digital their impact on bonding and parenting from technology was resulting in less free play, infancy – knowledge which could then be unsupervised viewing, sleep disruption, used to inform more robust guidelines. addictive behaviours, obesity, speech and language delay, and difficulties around social “It is also important to understand what interaction and self-regulation. mobile technology is replacing, which I suspect is our connectedness to nature,” she said.
An ORIGINS sub-study being carried out by Curtin University’s Professor Leon Straker and Dr Juliana Zabatiero, in collaboration with Professor Silva, will interview parents about their family screen habits, along with what they think about the use of mobile touchscreen devices by young children.
A small number of parents signed up to a bigger ORIGINS study looking at the impacts of technology use on early development will Mother Jamee Brien and her children Cooper, Chelsea and Mackenzie, are taking part in ORIGINS research about children's use of be asked how many and what kind of screen technology. Photo courtesy The West Australian. Professor Desiree Silva devices they have in their homes, what a
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typical week of screen device use looks like for them and their family, why they use them, and “The information we gather from how they manage that use. these interviews will inform public ORIGINS PROJECT GROWS IN policy, future research, and the “Within the larger study we’re looking at screen time and impacts on things like behaviour, development of realistic, co- emotional, motor, language and cognitive designed interventions aimed at LEAPS AND BOUNDS development,” Professor Silva said. helping parents to better guide their young children’s use of “This smaller study will involve interviews with screen technology.” It’s been a big two years for the like asthma, allergies, diabetes parents that allow us to dig more deeply into - Professor Desiree Silva collaborative ORIGINS Project, and obesity. how families use electronic devices, particularly a longitudinal birth cohort study mobile screen technology. It will go into much which launched in 2017 with So far almost 2,000 families have more detail. plans to recruit and follow the been recruited, and more than progress of 10,000 Perth babies 1,500 ORIGINS babies have been and families over a decade. born. Of those, almost 500 have attended their one-year clinic The largest study of its kind appointments. in Australia, ORIGINS is a About ORIGINS partnership between Telethon Unique among other birth cohort Kids and the Joondalup studies, ORIGINS currently has The ORIGINS Project is a $26 million, 10-year collaboration between Health Campus, aimed at reducing the 600 fathers participating in the research. the Telethon Kids Institute and Joondalup Health Campus which rising epidemic of non-communicable The project has ensured active community diseases by providing a healthy start to life. involvement, holding dozens of events aims to recruit 10,000 pregnant women and their families to collect ORIGINS researchers are collecting detailed bringing study participants and community information on how a child’s early environment and parents’ health information about babies and their families members together with paediatricians to understand more about how the early and health nurses to monitor and discuss and genetics influence the risk of a wide range of disease and environment influences the risk of diseases childhood health. chronic conditions. Milestones so far include:
More than 250 local, national and international researchers, clinicians and consumers involved
15. sub-projects have been launched off the main project, looking at multiple aspects of child and family health and development
.12 active ORIGINS Research Interest Groups have been launched, to facilitate collaboration, provide expertise, develop nested sub-projects, and support students
More. than 3,000,000 data points collected from participant samples and questionnaires Wide media coverage – more than 30 media items with an audience reach more than two million people ORIGINS Forum held in August 2018 attracted more than 160 attendees, generating collaborative ideas for future ORIGINS Project research and sub-projects Annual family fun day attracted almost 200 attendees Researchers have presented at more than 30 conferences and community events
10 research papers have been published from the data and knowledge obtained from the project A book chapter called ‘The ORIGINS Project’ was published in the international book Pre-emptive Medicine: Public Health Aspects of Developmental Origins of Health and Disease
Co-Director. Prof Susan Prescott won the Independent Book Publishers 2018 Gold Medal in the health category for her book Secret Life. She was also a finalist in Forward Review's Indie Book of the Year. ORIGINS is supported by the Paul Ramsay Foundation and the Federal Government through Channel 7 Perth’s Telethon. For more information on ORIGINS visit originsproject.telethonkids.org.au
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