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/