Ms. Kathryn Greiner AO, Chair-elect of the Paediatrio Board, alongside The Hon Jillian Skinner MP, Minister for Health, officially inaugurated PAEDIATRIO, a groundbreaking pediatric research partnership, at Parliament House, Macquarie Street, Sydney, on December 6th, 2016.
Author: Luminesce Alliance
#LA2024 Conference call for abstracts
Join us for the Luminesce Alliance 2024 Conference – Paediatric Precision Medicine: Advancing Research and Patient Care at the UNSW Sydney, Australia from 7–8 November 2024.
The aim of the conference is to showcase innovation, collaboration, and excellence in precision medicine research. Together we will explore the latest developments in basic, translational, and clinical research concerning children and families grappling with rare genetic diseases and cancers.
The conference brings together a distinguished cohort of keynote speakers and a wide range of researchers and clinicians including, post-graduate students, early career Fellows, nurses, allied healthcare workers, as well as government and the MedTech and Pharma industries.
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Bridging the gap between medical science and personal experience
A series of six ‘Finding a Way’ positive psychology video resources is helping to bridge the gap between medical science and the personal experience of parents who care for young children with severe epilepsy and other serious brain disorders.
With the support of Luminesce Alliance, the videos were developed by Dr Suzanne Nevin in collaboration with clinicians and researchers from the School of Clinical Medicine UNSW and the Paediatric Epilepsy Network New South Wales (PENNSW) (Prof Annie Bye, Fleur LeMarne, Erin Beavis, Rebecca Macintosh, Prof Claire Wakefield, Dr Rani Sachdev, Dr Elizabeth Palmer and Prof Kenneth Nunn). The videos reflect different stages, joys and heartache experienced by families.
The suite of videos, released in March 2022 across Sydney Children’s Hospitals Network, have proven to be a valuable resource for parents, families and clinicians caring for children with severe brain disorders.
More than 160 caregivers from 18 countries reviewed the resources, with 56 caregivers completing over 85% of the evaluation. Caregivers rated the resources as highly acceptable and relevant to their experiences with caregivers reporting that the resources normalised their emotional experiences and provided helpful suggestions about managing their personal relationships, seeking support and accepting help from others.*
“They resonated with me, right from video one. They put into words exactly how I felt through this journey. I actually nearly cried in the second video as I felt someone gets it. That’s me. I also loved how it describes how others cope with the diagnoses and gave me a better understand of my husband’s role”
“The practicality of each video. Parents need permission to grieve and hear these videos from the beginning of their journey. The medical field is all parents initially get but don’t receive any emotional, spiritual support.”
“They were beautiful. I’m literally in tears as I write this, I wish I’d had access to something similar 4 years ago when we got our child’s diagnosis, but I’m grateful for them today, they’re still just as relevant today as they would have been back then. Thank you.”
“I was looking for answers on this topic since my son was born, but I couldn’t find them. I really appreciate there is enough money and effort for parent’s mental health.”
The videos contribute to Luminesce Alliance Psychosocial Research Enabling Platform programs to improve the understanding of how patients, carers and health professionals deal with the challenges of the introduction of precision medicine, such as the risk of unrealistic expectations and understanding the implications of genetic screening for the extended family.
To ensure that all children and young people benefit from precision medicine, Luminesce Alliance extend research beyond the laboratory to address the psychosocial risks of precision medicine and ensure its equitable rollout.
Luminesce Alliance is one of the first organisations in the world to examine the psychosocial impacts of precision medicine. Our insights contribute to world leading collaborative psychosocial research in childhood genetics.
Psychosocial approaches to medicine look at patients’ and families’ experiences, understanding and communication around treatment, the surrounding social environment, and how these combine to impact the physical and mental wellness of individuals.
Psychosocial Research is one of five Luminesce Alliance ‘Enabling Platforms’. The Psychosocial Platform looks at the psychosocial implications for children and their families of precision medicine and genetic testing, and how to support and educate healthcare professionals in delivering precision medicine.
New techniques, such as whole genome sequencing, are rapidly changing our understanding and treatment of cancer, rare disease and neurodevelopmental disorders such as epilepsy, however the potential impacts of paediatric precision medicine programs on the psychosocial wellbeing of families are poorly understood.
Our researchers identify common impacts of, and barriers to, precision medicine, and develop educational resources for families and health care professionals.
Links to video resources:
- Finding a Way videos: Paediatric Epilepsy Network New South Wales website.
- Psychosocial implications of precision medicine: Luminesce Alliance
*Publications:
Nevin SM; Wakefield CE; Le Marne F; Beavis E; Macintosh R; Sachdev R; Bye A; Palmer EE; Nunn K, 2022, ‘Piloting positive psychology resources for caregivers of a child with a genetic developmental and epileptic encephalopathy’, European Journal of Paediatric Neurology, 37, pp. 129 – 138, http://dx.doi.org/10.1016/j.ejpn.2022.01.022
About Luminesce Alliance
Luminesce Alliance is a not-for-profit cooperative joint venture between the Sydney Children’s Hospitals Network, the Children’s Medical Research Institute, the Children’s Cancer Institute, the University of Sydney, and the University of New South Wales Sydney. It has been established with the support of the NSW Government to coordinate and integrate paediatric research. www.luminesce.org.au
About UNSW Sydney
UNSW Sydney is a global top 20 university, known for innovative, pioneering research and high-quality education with a global impact. Since our foundation in 1949, our aim has been to improve and transform lives through excellence in research, outstanding education and a commitment to advancing a just society. https://www.unsw.edu.au/
About Sydney Children’s Hospital Network
Sydney Children’s Hospitals Network is the largest paediatric health entity in Australia, with a team of 8,000 staff committed to providing world-class paediatric health care in a family-focussed, healing environment. https://www.schn.health.nsw.gov.au/
Luminesce Alliance and Child UnLimited form partnership
Luminesce Alliance and Child UnLimited are delighted to form a collaborative partnership to strengthen the consumer engagement initiatives included in Luminesce Alliance’s Psychosocial Enabling Platform.
The partnership builds on Child UnLimited’s expertise and networks to ensure that consumers are guiding the research supported by the platform.
Luminesce Alliance is one of the first organisations in the world to examine the psychosocial impacts of precision medicine on children and their families.
Precision medicine, also known as personalised medicine, offers precise assessment, diagnosis and treatment based on analysis of complex biological systems, such as through genetic or molecular profiling. It is especially important for children, as admissions to tertiary paediatric hospitals in NSW are dominated by genetic conditions (about 40-50% are estimated to have a major genetic contributory factor) and around 15-20% of childhood cancers appear to be associated with an underlying genetic predisposition.
Anastasia Ioannou, Executive Director, says “Our research insights contribute to world leading collaborative psychosocial research in childhood genetics. We aim to improve the understanding of how patients, carers and health professionals deal with the challenges of the introduction of precision medicine, such as the risk of unrealistic expectations and understanding the implications of genetic screening for the extended family.”
“Psychosocial approaches to medicine look at patients’ and families’ experiences, understanding and communication around treatment, the surrounding social environment, and how these combine to impact the physical and psychological wellbeing of individuals.”
Kris Pierce Director, Child UnLimited – Consumer Engagement, says “Our combined efforts will prioritise the psychological, social, and educational wellbeing of patients and their families. The programs emphasise support for priority populations to ensure equitable access and to inform the development of resources to benefit all families and health professionals participating in precision medicine.”
“Importantly, the partnership will allow each organisation’s respective initiatives to be coordinated with other consumer activities underway, to maximise the benefit from and minimise the burden of, consumer involvement on patients and families.”
About Luminesce Alliance
Luminesce Alliance is a not-for-profit cooperative joint venture between the Sydney Children’s Hospitals Network, the Children’s Medical Research Institute, the Children’s Cancer Institute, the University of Sydney and the University of New South Wales Sydney. It has been established with the support of the NSW Government to coordinate and integrate paediatric research.
Psychosocial Research is one Luminesce Alliance five ‘Enabling Platforms’. The Psychosocial Platform looks at the psychosocial implications for children and their families of precision medicine and genetic testing, and how to support and educate healthcare professionals in delivering precision medicine.
About ChildUnLimited
ChildUnLimited is a national network of researchers, clinicians, young people and families working together to improve the lives of children with chronic illness and disability. At its core is a Consumer Board, made up of 12 parents and young people with lived experience of chronic illness and disability. ChildUnLimited has recently appointed a young person’s consumer group with the aim of ensuring consumers are involved at all stages of the research pathway. For more information visit www.childunlimited.org/
Congratulations to MRFF grant winners Prof. Sue Woolfenden and team
The University of Sydney Prof. Sue Woolfenden, Dr Katarina Ostojic, and their team of chief and associate investigators have been awarded a $1.46million MRFF Grant for Clinician Researchers Applied Research in Health for “Equitable Pathways and Integrated Care in Cerebral Palsy” (EPIC-CP).
Luminesce Alliance is delighted to see that our initial support of Dr Katarina Ostojic has progressed to further recognition of Prof Woolfenden, Dr Ostojic, and the team to address the psychosocial risks of precision medicine and ensure its equitable rollout.
EPIC-CP is a social prescribing intervention co-designed with children and young people with cerebral palsy (the most common physical disability in Australia), their parents/carers, and service providers at three NSW Children’s Hospitals: Sydney Children’s Hospital at Randwick and Children’s Hospital Westmead (SCHN), and John Hunter Children’s Hospital in Newcastle. The initial co-development and piloting of EPIC-CP was supported by the Cerebral Palsy Alliance Research Foundation, Sydney Children’s Hospitals Foundation, and Luminesce Alliance.
To date, EPIC-CP involves standardised identification of unmet social needs in the clinical setting, engagement with a Community Linker to identify and connect patients with appropriate supports and care, and a resource pack of available health, social, disability, and education supports for children and young people with cerebral palsy and their families.
In this grant, the team will conduct a large-scale, randomised controlled trial, with economic and implementation evaluations of EPIC-CP across the three Paediatric Rehabilitation Teams in NSW.
The EPIC-CP team include clinicians, researchers, knowledge translation experts, and consumer investigators with lived experience of cerebral palsy from across Sydney Health Partners , Maridulu Budyari Gumal (Sydney Partnership for Health, Education, Research and Enterprise ), and regional partners.
The funding will contribute towards the research team, Community Linkers, an Aboriginal researcher, economic evaluation, trial statistics, implementation evaluation, and consumer advisor payment for the ongoing effectiveness trial.
The grant is part of nearly $230 million in funding to Australia’s best and brightest researchers to undertake potentially groundbreaking, life changing health and medical research projects, to discover new ways to tackle many of the health and medical issues that impact people every day.
Read more about EPIC-PC here.
About Luminesce Alliance
Luminesce Alliance is a not-for-profit cooperative joint venture between the Sydney Children’s Hospitals Network, the Children’s Medical Research Institute, the Children’s Cancer Institute, the University of Sydney, and the University of New South Wales Sydney. It has been established with the support of the NSW Government to coordinate and integrate paediatric research.
About University of Sydney
About us – The University of Sydney
About Cerebral Palsy Alliance
Cerebral Palsy Alliance is a ground-breaking, global centre of expertise for cerebral palsy research, advocacy, intervention and assistive technology innovation.
As the world’s largest private funder of cerebral palsy research, we bring together a powerful alliance of great minds. Our research-informed interventions are world-class, our unique accelerator program is unlocking the potential of technology to drive greater inclusion for people with disability, and our voice is a powerhouse for bringing together communities and countries in effecting change.
For over 75 years, we have been driven by our founders’ vision of a future where nothing is impossible for people with cerebral palsy and similar conditions. Today, the 17million+ global cerebral palsy community, together with our 2500+ employees and 150,000+ donors, fundraisers and entrepreneurs, are contributing to solving the next set of impossibilities. To find out more visit www.cerebralpalsy.org.au
About Sydney Children’s Hospital Foundation
One of the largest and most trusted kids’ health charities in the country, Sydney Children’s Hospitals Foundation exists to help provide all children with access to the best possible healthcare, whenever and wherever they need it. We have been delivering on this promise for the last 35 years, raising millions every year for a collective of two major children’s hospitals, specialised care services, and cutting-edge paediatric research, operating across NSW. A conduit, an enabler, and a mechanism for powerful change, we make sure funds raised go directly to the front line of children’s healthcare – from the hospital wards to the treatment rooms, the research labs to the outreach programs. Together with our Movement of Many we are All in for Kids Health. To find out more visit
Join our webinar on 18 April 2024 to find out how to become part of the THINK Advanced Therapeutics Pipeline Program
Clinicians and researchers are invited to attend a webinar on 18 April 2024 led by A/Prof Greg Arndt, Head of the Australian Cancer Research Foundation (ACRF) Drug Discovery Centre at Children’s Cancer Institute, to learn of ways in which projects are reviewed and selected for the THINK Advanced Therapeutics Enabling Platform funded by Luminesce Alliance.
THINK is a disease-agnostic integrated pipeline of technologies, capabilities, and expertise that spans all stages of the drug discovery and development pathway for not only cancer, but also new projects in rare genetic diseases and neurodevelopmental disorders.
To find out more, including how to register, click here.
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