Revolutionising Paediatric Healthcare: Luminesce Alliance’s Impact in Precision Medicine

Luminesce Alliance, in collaboration with our partners, is thrilled to announce the successful completion of the four-year Paediatric Precision Medicine Program 2019-2023, generously funded by the NSW Government. This groundbreaking program was designed to prioritise the early diagnosis and treatment for children with cancer and rare diseases, integrating cutting-edge technologies into personalised clinical care.

The collective efforts of our remarkable partners, dedicated researchers, and skilled clinicians have resulted in several noteworthy achievements, these include:

  • The transformation of an initial investment of $24 million into an impressive $294 million in leveraged funds. This achievement highlights our commitment to maximsing resources for the betterment of paediatric healthcare.
  • Job creation, with the establishment of over 140 STEM positions, thereby contributing to the growth of a skilled workforce.
  • Facilitating the initiation of 20+ clinical trials, showcasing our commitment to advancing medical research and treatment methodologies.
  • Our commitment to global collaboration with over 450+ partnerships nationally and internationally. This extensive network has allowed us to share knowledge, resources, and expertise on a global scale, fostering a collaborative approach to paediatric precision medicine.
  • The Alliance’s contribution to the scientific community with over 150+ publications and the presentation of findings at 195 global conferences. This dissemination of knowledge ensures that our advancements in paediatric precision medicine are shared widely, contributing to the global discourse and inspiring further innovation.

To find out more about the program refer to our recent Impact Report 2022-2023.

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Submit your EOI for subsidised Functional Genomic support services

Expressions of Interest (EOI) are invited from paediatric precision medicine research teams seeking to use the subsidised services of the Luminesce Alliance Functional Genomics Enabling Platform.

The Luminesce Alliance Functional Genomics Enabling Platform delivers new research capacity across stem cell medicine and vectorology, intensifiying collaboration, research translation and end-to-end commercialisation and competitive advantages. The platform is one of five Luminesce Alliance Enabling Platforms. Read more

The EOI is open to Luminesce Alliance partner organisations (Sydney Children’s Hospitals Network, Children’s Medical Research Institute, Children’s Cancer Institute, University of NSW, University of Sydney). For full criteria read more 

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The first-ever Inherited Retinal Disease Patient and Family Day a resounding success

Image L-R: Professor Robyn Jamieson, Arato, Nas Campanella, Jenna Jones

Luminesce Alliance was delighted to attend the first-ever Inherited Retinal Disease Patient and Family Day on 24 March 2024. The day was a resounding success, attracting more than 120 participants from NSW, Victoria, South Australia, Queensland and New Zealand.

The day provided an opportunity for patients and families to share their experiences, hear the latest research and learn about the path from diagnosis to treatment, and to connect with others with lived experience.

It was especially valuable to hear the lived experience of our panel including ABC journalist Nas Campanella, Paralympian Jenna Jones and Jeans for Genes ambassador Arato.

Professor Robyn Jamieson and A/Prof Anai Gonzalez Cordero talked about their work in eye genetics and stem cell medicine before engineer Santiago Velasquez from EyeSyght talked about using technology to improve accessibility.

“The interaction with patients is tremendously beneficial to our researchers. This has been great for them to understand the impact that their work can have in real life,’’ A/Prof Gonzalez Cordero said.

The day ended with discussion on living with vision impairment. Paralympic swimmer Jenna Jones encouraged parents to make their children more independent.

“Just because I have support doesn’t mean I’m not living an independent life. It’s important to teach your kids to advocate for themselves and ask friends for help,’’ she said.

The day was hosted by the Behavioural Sciences Unit at UNSW and the Stem Cell Medicine group at the Children’s Medical Research Institute, with the support of Medical Research Future Fund (Australian Government Department of Health and Aged Care), UNSW Medicine and Health and Luminesce Alliance.

Video Resources:

Welcome Address from the Hon Mark Butler MP

An introduction to Inherited Eye Diseases

Current and future diagnosis and management of Inherited Eye Diseases

An introduction to advance therapies for Inherited Eye Disease

Recreating the disease in the lab

Gene therapy: a Luxturna implementation example

How far can you go …in the shoes of a blind man?

Panel discussion

Playlist of all videos

 

 

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What we can learn from precision medicine programs

Luminesce Alliance supported a psychosocial study that explores how precision medicine is changing the roles of healthcare professionals, scientists, and research staff. This recent published paper reports on the study and the data that was collected via PRISM-Impact, a psychosocial study running alongside the PRecISion Medicine for Children with Cancer (PRISM) trial. The PRISM trial is embedded in the Zero Childhood Cancer program.

The paper reveals that although many of the 85 participants described experiencing great emotional stress, lack of formal training and unique challenges, most however expressed very positive views about the impact of precision medicine on their profession and its future potential.

 

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PREDICT trial – a step toward better cancer diagnosis

With funding support from Luminesce Alliance, the cancer PREDisposition In Childhood by Trio sequencing study (PREDICT), assesses the clinical benefit and utility of family-based germline Whole Genome Sequence to identify underlying cancer predisposition.

The PREDICT team recruited more than 200 patients/families in the past 3 years publishing their first protocol paper. View publication here.

More publications on various aspects of the project will soon follow.

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$20 million investment from the NSW Government to deliver our Enabling Platforms

NSW Government has invested $20 million to fund the next generation of world-leading research into paediatric precision medicine being led by the Luminesce Alliance.

The Alliance is a unique world-class paediatric research cooperative, comprising five leading health delivery and medical research organisations in NSW – Sydney Children’s Hospitals Network, Children’s Cancer Institute, the Children’s Medical Research Institute, University of New South Wales and University of Sydney. Our researchers across these organisations work collaboratively to deliver better health outcomes for children, particularly those impacted by cancer, early onset diseases and neurodevelopmental disorders.

Despite medical advances, cancer and inherited diseases are the leading causes of death in children worldwide. At least one in 20 babies is born with an inherited disease or neurodevelopmental disorder and around 1,000 young people are diagnosed with cancer annually in Australia. Many diseases of adulthood start in childhood, so advances in detection and treatment benefit the whole community. The new funding will allow Luminesce Alliance to continue to grow as a paediatric research powerhouse and will make a difference to the lives of children diagnosed with cancer and genetic diseases and their families and provide long-term health and economic benefits to the community.

The four-year funding commitment will allow the Alliance to develop infrastructure and collaborative networks known as Enabling Platforms. Leading researchers, from across our partner organisations, will focus on improving the understanding and application of paediatric precision medicine in five areas:

  • Functional genomics: identifying and understanding disease-causing genes and new treatments
  • Data: using big data to improve detection, treatment, and outcomes
  • Precision therapy: delivering new drugs and novel medical technologies that will support early phase clinical trials
  • Psychosocial: developing world-leading best practice for psychological, emotional, social, and educational support of patients and their caregivers
  • Health systems implementation and economic research: translating research discoveries into new models of care.

About Luminesce Alliance: First funded by a $24 million investment from the NSW Government in 2019, Luminesce Alliance created its first enabling platform: the Centre for Paediatric Precision Medicine.  From that initial funding, the Alliance leveraged more than $294 million in additional funding, a 12-fold return on investment.

The Alliance has already supported ground-breaking research, clinical trials and pursued gene discovery and therapy approaches, and enhanced national precision medicine programs such as the Zero Childhood Cancer program.

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Impact for Children’s Health Report 2022 – 2023

Luminesce Alliance is proud to announce that we have just released our Luminesce Alliance Impact Report 2022_2023.

The report highlights the impact of research projects funded through our Centre for Paediatric Precision Medicine and demonstrates ways in which we have increased the scale and enhanced the excellence of our translational and discovery research in paediatrics.

Most importantly, the report demonstrates how we are improving the prediction, detection and treatment of a variety of childhood diseases and conditions and the impact this has on the health and wellbeing of children and their families.

Our 2021 Luminesce Alliance Impact Report is found here.

 

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