Overview – Luminesce Alliance

What we do

We are revolutionising paediatric healthcare and research by funding cutting-edge infrastructure, research and treatments for rare conditions, and clinical trials to deliver the best possible care for patients and their families.

We turn research into new treatments for children

As an alliance between clinical and research organisations, we enable clinicians to drive the research agenda (bedside to benchtop) and researchers to support rapid translation of their work in our hospitals (benchtop to bedside).
We underpin the research done by our partners through enabling platforms like bioinformatics, health economics, implementation and psychosocial research.
We also provide seed funding for blue-sky research in innovation projects.

We possess the necessary scale to actively drive change

Greater collaboration means we can achieve the critical mass in NSW that we need to do truly transformative research. Together, our member organisations can achieve more that any one organisation can on its own.
When researching treatments for rare diseases, there are often only a handful of patients in the world. Sydney Children’s Hospital Network sees more than 35% of the sickest children in Australia. In turn, these children get access to brand new treatments and clinical trials.
Our scale also provides opportunities for collaboration and cost saving, for example through shared research platforms.

We achieve strength in collaboration

The ‘omics’ revolution is showing us that diseases we once thought of as separate and unrelated may in fact share common roots, shared pathways or similar mechanisms.
This realisation has created a new frontier of medical research, with unprecedented opportunities for improving children’s health.
But collaboration is necessary to realise the benefits for children.
Collaboration is the cornerstone of everything we do at Luminesce Alliance.
Our members cover a wide range of paediatric health issues, from cancer and rare diseases to orthopaedic surgery and mental health.
They also share approaches to healthcare including significant expertise in ‘omics’, use of new technologies such as 3D printing for surgery, and, increasingly, a focus on population health.

Why and how we do it

Despite medical advances, cancer and rare diseases are the leading causes of death in children worldwide.

Around 400,000 Australian children have genetic diseases and cancer.
On average, about 1,000 new cases of cancer in children and young people are diagnosed annually in Australia and about 20% of Australian children with cancer will die from the disease.

Of the 1,000 diagnosed annually, NSW sees about third of these children and young people.
There are around 180,000 children who suffer from a known rare genetic disease in NSW, many of which are serious or life-threatening, and have no available treatment options.

New technologies mean we have a better chance than ever before to understand and manage genetic diseases and cancer.

Rare diseases in children impact us all

Genetic diseases usually appear in childhood and lead to lifelong complications through adulthood.
These diseases can impact the entire community through the cost of care and the financial and psychological burden on families.
Many diseases of adulthood start in childhood, so improving diagnosis, prevention and treatment has significant long-term benefits.

Children are different to adults

Children metabolise drugs differently to adults and need tailored treatment regimes.
However, currently 80% of drugs used in children have been developed for use in adults. Smaller doses of adult medicine may be ineffective or unsafe for children.
There is a great need to prioritise paediatric research in order to develop and test new treatments for children.

Paediatric research is essential for the future health of the community

Paediatric research aims to prevent the burden of disease through the lifecycle. As well as reducing healthcare costs and improving quality of life for children, many of our scientific discoveries will also advance research into adult health.

There is a need to unify paediatric research

Paediatric research is often done in silos. But there is a lot of knowledge we can share that will benefit us all.
Better coordination of research enabling platforms and streamlining research governance and support services enables our member institutions to achieve more than they could individually.

Paediatric research is greatly under-resourced

In Australia and internationally, the vast bulk of medical research funding is spent on adult diseases – the largest market for pharmaceuticals.
However, there is a current movement in the European Union and the United States to boost funding for paediatric research.