National Scientific Advisory Group

Senior Staff Specialist (Sleep Medicine) and Conjoint Professor, The Children’s Hospital at Westmead and The University of Sydney (MBBS, FRACP, PhD, GCCM).

Karen is a Paediatrician who has combined her clinical work at the Children’s Hospital with her research in SIDS for over 25 years. She is Head of Sleep Medicine at The Children’s Hospital at Westmead and also heads the SIDS and Sleep Apnoea Research Group at that hospital.

Research Interests:

• Sudden Unexpected Death in Infancy. Karen is currently leading a team who are working to identify biochemical defects that underlie some infants’ vulnerability to sudden death and hopes to turn those findings into a method for population screening.
• Management of sleep problems in children with neurodisability: Karen is a lead investigator on a Medical Research Future Fund (MRFF & NHMRC) funded study that aims to better understand the sleep problems in children with syndromes and developmental issues, as well as developing tailored treatment strategies to manage these problems
• Behavioural and cognitive consequences of obstructive sleep apnoea in children: Karen is the Lead Investigator on an NHMRC-funded randomised trial to study how obstructive apnoea in the preschool years can influence behaviour, sleep and learning.

Karen’s career in research has led to over 200 peer-reviewed publications and National (NHMRC) and international (NIH) funding. She began her research into Sudden infant death during her PhD and post-doctoral studies. Her work has included clinical studies of infant sleep, use of animal models, and studies of the Neuropathology of SIDS at the University of Sydney. Her recent work has been predominantly supported by Philanthropic support provided by families affected by a SIDS event.

Karen worked with Government agencies on public health advice when Safe Sleep Guidelines were being introduced and collaborated with the Coroner’s department for a number of years for her research into SIDS.

Regarding children with disabilities, Karen has served on the Board of EnableNSW and helped develop guidelines for the provision of publicly-funded Respiratory Equipment for children with breathing disorders. She heads the Home Ventilation Program at The Children’s Hospital at Westmead. Karen continues to work as a member of working groups for The Australian Sleep Association and Thoracic Society of Australia and New Zealand. Her roles there include such tasks as Developing Guidelines for the management of children being ventilated in the home and for Activity and Movement guidelines for Children.

Dr. Lorraine du Toit-Prinsloo is the Chief Forensic Pathologist and Clinical Director of Forensic Medicine, NSW Health Pathology, Forensic and Analytical Science Service. She trained as a forensic pathologist in South Africa. She has supervised undergraduate and post-graduate students and acted as an examiner both nationally and internationally. She has several published articles and 4 book chapters.

Neonatologist and Clinical Senior Lecturer, Royal Prince Alfred Hospital The University of Sydney

Adrienne is a Neonatal Staff Specialist in the RPA centre for newborn care and an NHMRC Early Career Research Fellow at the University of Sydney. She has a Masters of Public Health and a PhD on risk factors for stillbirth for which she received an NHMRC Public Health Scholarship. She is particularly interested in perinatal topics with a public health impact that have the potential to improve pregnancy and newborn outcomes.

Adrienne is on several State and National Committees that are directly responsible for policy and practice in the provision of perinatal care. She is Deputy Chair of the National Scientific Advisory Group of Red Nose, a member of the IMPACT network for improving health through perinatal clinical trials, represents NSW on the National Perinatal Mortality Report project and has close links with perinatal consumer groups such as Miracle babies and the Stillbirth Foundation Australia. She is an avid supporter of evidence-based policy and practice and is passionate about translating research into clinical care.

She led the Sydney Stillbirth Study which assessed modifiable risk factors for late pregnancy stillbirth across nine different hospitals. The results of this project have contributed to the recent establishment of a specialised bereavement support service (iSAIL – integrated support after infant loss) within Sydney Local Health District. Adrienne is also Project Lead for the Charles Perkins Centre’s BABY1000 Study. BABY1000 is a visionary project which will provide a major contribution to knowledge regarding early life predictors of health and disease and the interventions that will ultimately improve health for our future generations.

Dr Susan Arbuckle is a senior Staff Specialist at the Children’s Hospital at Westmead in Histopathology. She is on the NSW Maternal and Perinatal Committee and on the Perinatal Outcomes Working Party. She also sits on the State Birth Defects Committee and has been involved with PSANZ and with the Stillbirth Project. In the past she has been involved with college committees and organising the paediatric and perinatal component of various meetings.

She has been an author on a number of papers, the majority of which have been in paediatric and perinatal pathology. Her particular interest has been the aetiology of stillbirth and placentas.

Susan has set up and organised a Perinatal Service, which is now used by Western Sydney, Central & South West Sydney, Gosford, most private hospitals in Sydney and many of the country hospitals. The quality and care offered by this service is much appreciated by those using it. Careful examination is made of every perinatal case to find, if possible, the aetiology and possible cause of the perinatal death. Education of clinicians and providing answers and appropriate care of the babies for the parents and clinicians is a focus of the service.

Dr Carrington Shepherd is a Senior Research Fellow (PhD, Curtin University) at the Telethon Kids Institute (TKI), and Adjunct Senior Research Fellow at Murdoch University and the University of WA.

He has led the Child Mortality Research program at TKI since 2010, which features the use of unique population data to investigate ways of reducing preventable and unexplained deaths in the early life course.

Dr Shepherd’s collaborative networks include the Western Australian Perinatal Epidemiology Group and the newly formed Australian Stillbirth Awareness & Prevention (ASAP) Collaborative —which brings together Stillbirth Parents, Educators, Awareness Advocates and Researchers with a passionate interest in reducing preventable stillbirths.

He also leads a research program that aims to bridge the knowledge gap on social inequalities in Aboriginal health in Australia and his research explores how social determinants and pathways can lead to enhanced life outcomes and a reduction in preventable deaths.

Nicole is a bereaved mother to her daughter Isla who lived 6 days in NICU after suffering birthing complication at 38weeks in 2016.

Since then she has become incredibly passionate about the bereavement support offered to maternity staff and families experiencing child loss in hospitals.

Nicole has developed ISLA grief & loss, a service which works to improve the confidence and capabilities of front-line maternity staff through perinatal bereavement education.

On her journey since October 2017, Nicole has delivered dozens of talks to many hundreds of maternity professionals, developed a resource folder for maternity staff which is used at 21 different maternity hospitals in Melbourne, created the private Facebook group ISLA grief & loss NETWORK for providers, and surveyed hundreds of front-line staff to understand their challenges and current practices.

Nicole’s background is a postgraduate trained physiotherapist and mother to her living boys. She has completed Certificate IVs in Bereavement Support and Training & Assessment and is also a trained Peer Supporter with Red Nose.

Assoc Prof Fran Boyle is a social scientist at The University of Queensland’s Institute for Social Science Research and Co-lead of the Care after Stillbirth Program at the Centre of Research Excellence in Stillbirth (Stillbirth CRE).

Fran has a background in psychology and public health and is engaged in health services research and evaluation in a range of hospital and community settings. She is strongly committed to ensuring that care is informed by the latest best-practice evidence. Fran’s work is also driven by the firm belief that consumer perspectives and understanding of people’s lived experiences of health and their health care systems are essential to developing responsive and effective policy and practice.

Fran is passionate about improving perinatal bereavement care and ensuring that all parents receive the best possible care when a baby dies. She co-led the development of the 2019 Perinatal Society of Australia and New Zealand/Stillbirth CRE Clinical Practice Guideline for Respectful and Supportive Perinatal Bereavement Care.

Like many who are drawn to research and practice in this area, Fran’s involvement began with her own lived experience of the loss of a baby soon after birth. Her PhD looked at the psychosocial consequences of stillbirth, neonatal death and SIDS on families over time and she has since published numerous articles on the topic of perinatal bereavement care.

Fran has a deep understanding of the widely varying needs of parents following pregnancy loss and the essential role of parent-focused organisations such as Red Nose in helping to address those needs.

Professor Paul Colditz is the foundation Professor of Perinatal Medicine at the University of Queensland and Director of the Perinatal Research Centre. He is a practicing clinician in neonatology as well as holding a Masters in Biomedical Engineering from the University of NSW and a Doctor of Philosophy from the University of Oxford, UK.

Paul leads a multidisciplinary research team from diverse backgrounds including medicine, science, nursing, psychology, physiotherapy, other allied health, signal processing and biomedical engineering to focus on improving health outcomes for mothers and babies through clinical and translational research. He is a member of the Qld Health’s Maternal and Perinatal Quality Council and a panel member of the Qld Child Death Case Review Panel (DeptCommunities, Child Safety and Disability Services).

Paul is a Board member of the Royal Australasian College of Physicians and Chair, College Research Committee. He is President-elect of the Paediatrics and Child Health Division, RACP.

Professor Roger Byard AO PSM, FAHMS holds the Marks Chair of Pathology at The University of Adelaide and is a Senior Specialist Forensic Pathologist at Forensic Science SA in Adelaide, Australia. He has been associated with Red Nose (formerly SIDS and Kids) at state and national levels for 34 years as a researcher, pathologist, advisor and counsellor to families. He helped to set up the National Scientific Advisory Group in 2004 and has been a member for the past 20 years.

In 2000 he received the SIDS International Global Strategy Task Force Award in recognition of an outstanding contribution and support for global strategies to reduce infant mortality and in 2006 a National SIDS and Kids Award for his tireless commitment to reducing infant mortality in Australia and overseas and for his compassion and care to bereaved families. In 2016 he was the recipient of the Distinguished Researcher Award from the International Society for the Study and Prevention of Perinatal and Infant Death (ISPID).

In addition, he was awarded the Australian Public Service Medal (PSM) in 2004 for outstanding service to paediatric pathology and became an Officer in the Order of Australia (AO) in 2013 for distinguished service to medicine in the field of forensic pathology. In 2016 he was elected a Fellow of the Australian Academy of Health and Medical Sciences (FAHMS) for distinguished professional achievements and outstanding leadership in a field related to health and medicine. Two years later he received the John Harbor Phillips Award from ANZPAA/NIFS (National Institute of Forensic Sciences) for outstanding achievement and excellence in the advancement of the forensic sciences in Australia and New Zealand. He was registered as an Expert with the International Criminal Court (ICC) in the Hague in 2009.

He has a specific interest in sudden infant and childhood death and has published over 1,000 papers/short communications/letters in peer-reviewed journals and chapters. In addition, he coedited/wrote the following paediatric forensic texts:

1994 - Sudden Death in Infancy, Childhood and Adolescence (Cambridge University Press);

2001 - Sudden Infant Death Syndrome - Problems, Progress and Possibilities (Arnold publishers);

2010 - Sudden Death in the Young (3rd ed, Cambridge University Press, Japanese language edition 2015);

2014 - Forensic Pathology of Infancy and Childhood (Springer publishers - two volumes);

2018 - SIDS and Sudden Infant Death: the Past, the Present and the Future (University of Adelaide Press).

His research into substance P deficiency may explain why certain babies are at increased risk when sleeping facedown.

He was made a Professorial Fellow at The Florey Institute of Neuroscience and Mental Health in Melbourne, Australia, in 2013, and received Distinguished Alumni Awards from The University of Adelaide in 2013 and the University of Tasmania in 2016. He became a Distinguished Fellow of the Royal College of Pathologists of Australasia in 2018 and was elected a Fellow of the Royal Society of NSW in 2021.

He was ranked in the top 2% of scientists worldwide and #2 in legal and forensic medicine by Stanford University (US) in 2020, and in 2021 was named in the Australian Newspaper’s Annual Research Magazine a world leader in forensic science and one of the 13 Australian “Global Leaders” in research across all disciplines. He was also the recipient of the 2021 University of Adelaide Award for Outstanding Achievement and Excellence in Research and was listed in the top 3 (0.06%) of 5,022 published authors internationally on infant death (2011-2021). He is an alumnus of the University of Tasmania, The University of Adelaide, the University of South Australia (Australia) and McMaster University, the University of Toronto and the University of Ottawa (Canada).

In addition to his basic medical and other post-graduate qualifications, Professor Byard is a Doctor of Philosophy (PhD), a Doctor of Medicine (MD) and a Doctor of Science (DSc).

• Professor of International Maternal and Child Health (Hon), Sydney School of Public Health and until recently
  
• Paediatrician - Neonatologist at Royal Prince Alfred Hospital, Sydney
  
• Gates Foundation Clinical Trials Manager, Faculty of Engineering, University of Sydney.
  

Heather Jeffery AO, MB BS, PhD, MPH, FRACP, MRCP (UK)

Heather has extensive experience in Maternal and Child Health/ Neonatology in low/middle income countries.

Educational interests have focused on capacity building in perinatal care in Malaysia, Philippines, Indonesia, Thailand, Vietnam, Mongolia, The Balkans (Macedonia, Croatia, Serbia) working with governments, the World Bank, UNICEF, UNFPA, UNDP and the Hok Mai Medical Foundation, University of Sydney.

Research interests are currently focused in 4 areas

• A multidisciplinary nutritional body composition research program to identify newborns and young children at risk of mortality and morbidity from low fat stores using near infrared technology (Bill & Melinda GATES Foundation Funding)
  
• Prevention of neonatal infection and neonatal mortality and morbidity in four South East Asian countries (Philippines, Thailand, Malaysia, Indonesia) – the SEA URCHIN project - (Funded by NHMRC in collaboration with Cochrane Centre at Monash University)
  
• Educational methods to translate best evidence into practice (SCORPIO*) This has been trialed in NSW and applied to capacity building in Macedonia, Vietnam and the SEA URCHIN project (*SCORPIO: a medium for teaching that is Structured, Clinical, Objective Referenced, Integrated and Organised).
  
• Sudden Unexpected Death in Infancy. Future directions for prevention and research.
  

Since her PhD many years ago on SIDS she has maintained a research and community interest in the prevention of SIDS and Sudden Unexpected Death in Infants. She currently is a member of the National Scientific Advisory Group of Red Nose, Australia; Child Death Review Team, Ombudsman’s Office NSW, the Sudden Infant Death Advisory Committee NSW Health.

Awards

AO Officer Order of Australia, bestowed by the Governor General of Australia

“Professor Heather Elizabeth Jeffery – For distinguished service to medicine and tertiary education in the field of paediatrics, and to improved maternal and child health in rural and remote Australia and in developing countries”.

Sir Edward ‘Weary’ Dunlop Asialink Medal, bestowed by the Board of Asialink

Associate Professor Jane Freemantle OAM holds a Master of Public Health from the University of Adelaide and a PhD (Paediatrics) from the University of Western Australia. Professor Freemantle’s main career focus is as a paediatric epidemiologist working with total population linked data describing Indigenous infants, children and young people and communities, nationally and internationally.

She argues that unless we have complete and accurate data describing Indigenous populations, we will be unable to identify whether indeed we have successfully ‘closed the gap’ on Indigenous disadvantage. To this end, her particular focus is on ensuring that data that informs policies, strategies and initiatives aimed at reducing the disparities and improving outcomes of the social determinants of health and wellbeing experienced by Indigenous populations are complete and accurate. She has recently completed a program of research funded by the Australian Research Council the Lowitja Institute, Department of Prime Minister and Cabinet, the Aboriginal Health Branch of the Department of Health Victoria and the Ross Institute. The research has developed a more accurate and complete total population mortality profile of Victoria’s Aboriginal (and non-Aboriginal) children born between 1998-2008, using population data linkage and an innovative method and research process. This research has enabled for the first time a more accurate baseline from which to measure the success of state and national initiatives aimed at reducing the current disparities in mortality and maternal and infant outcomes experienced by Indigenous populations.

Professor Freemantle holds a position as Principal Research Fellow (hon) within the Melbourne School of Population and Global Health at the University of Melbourne, position as Principal research fellow within the Department of Rural health (Shepparton) has been an Australian Research Council Australian Research Fellow. Jane also holds an Associate Professor position at the Department of Paediatrics and Child Health at the University Of Western Australia, an honorary Senior Research Fellow at the Victorian Institute of Forensic Medicine, Monash University, Victoria, and is an Honorary Research Fellow, Telethon Institute for Child Health Research, University of Western Australia. She is a Chief Investigator on an Australian Research Council Linkage Grant (Monash University) and an Associate investigator on an NHMRC Program Grant.