Research to improve the lives of children with juvenile arthritis

Juvenile arthritis is a painful, debilitating and incurable disease which affects over 6,000 Australian children and almost two million children worldwide.

Two new University of Sydney-led research projects, with collaborators nationwide, have been awarded a total of over $4 million under the Australian Government’s Medical Research Future Fund to change the way children with juvenile arthritis are diagnosed, treated, and supported in Australia.

The first project, led by Professor Lyn March in collaboration with the Australian Paediatric Rheumatology Group, will be Australia’s largest ever trial researching the best treatment pathways for maximising symptom relief, disease control and quality of life while minimising treatment risks and side effects— such as from ongoing medication use.

The second project, led by Professor Natasha Nassar and co-designed with the Juvenile Arthritis Foundation Australia in collaboration with the Australian Paediatric Rheumatology Group, will establish systems to provide ongoing national data on juvenile arthritis for the first time in Australia, to improve early diagnosis and clinical pathways.

“Juvenile arthritis is the most common chronic inflammatory musculoskeletal condition in children and can lead to blindness and life-long disability,” said Professor March of the University of Sydney and The Kolling Institute, and Head of Rheumatology at Royal North Shore Hospital.

“The condition is more common in girls than boys and may affect a child’s bone development and overall growth. Sadly, there is no known cause or cure.”

In March this year the Parliamentary Inquiry into childhood rheumatic diseases tabled an interim report hearing evidence that, “..too few Australian children with childhood rheumatic disease are receiving the care they need as a result of two main issues – first, the lack of awareness of the disease including early diagnosis, and second, the shortage of paediatric rheumatologists throughout Australia.”

“Better monitoring and data on engagement with health services is needed to help us understand the extent of the problem and how we can get children the support and services they need early on, as well as throughout their lives,” said Professor and Financial Markets Foundation Chair Natasha Nassar from the University’s Children’s Hospital at Westmead Clinical School, Faculty of Medicine and Health and Charles Perkins Centre.

A3BC for Kids, led by Professor March and awarded $2.5million, aims to pave the way for a personalised approach to care and dramatically improve outcomes for children.

The centrepiece of the project is a large-scale clinical trial which will recruit more than 300 children from every major paediatric rheumatology treatment centre in Australia.

Current treatments involve the use of medications which target particular immune pathways. These medications help but can also dampen the immune system leaving children vulnerable to infection.

“International clinical and research experts agree we need to use these medications more effectively, but there is no high-quality data indicating when or how to take children off these drugs when their condition is under control,” said Professor March.

The CHAMPION (ChildHood Arthritis Multi-omic Predictions Improving Outcomes Nationally) trial will involve tapering medications to determine which children can come off these drugs and how best to withdraw them once the disease is controlled.

A broad range of biological, environmental and health information will be collected from participants throughout the study and will form part of the Australian Arthritis and Autoimmune Biobank Collaborative (A3BC) biobank-registry collection.

Co-Investigator and paediatric rheumatologist Professor Davinder Singh-Grewal from the University of Sydney and Sydney Children’s Hospitals Network said the study will provide researchers with crucial information around the effective use of medications and inform new treatment guidelines and clinical decision tools to support personalised medicine.

“This could be a global game changer for the management of children living with juvenile arthritis, improving health outcomes and reducing uncertainty for clinicians, patients and their families,” said Professor Singh-Grewal.

Professor Nassar’s project “JIA-KidsLink: Joint Venture to improve surveillance, clinical pathways and health outcomes of children with juvenile arthritis” has been awarded $1.6million to establish a national data linkage surveillance system of health service data and to conduct clinical audits and consumer engagement with the goal of improving children’s health and wellbeing.

Professor Nassar said the project grew out of focus groups with children and families affected by juvenile arthritis via her engagement with the Juvenile Arthritis Foundation of Australia.

“The project was very much co-designed by people with lived experience and the Australian Paediatric Rheumatology Group, representing all paediatric rheumatologists in Australia. It was something they told us they wanted and needed,” said Professor Nassar.

It also brings together a multidisciplinary collaboration of researchers from the University’s Children’s Hospital at Westmead Clinical School, Menzies Centre for Health Policy and Economics, School of Public Health in the Faculty of Medicine and Health, School of Psychology in the Faculty of Science, and the Charles Perkins Centre.

“Linked health care data will help us quantify the number of children affected by juvenile arthritis, to identify the types of health conditions affecting them, including complications, and examine the types of health care services children and families are accessing to manage their condition.”

Professor Nassar’s preliminary analysis of NSW data previously identified around 1400 children aged under 16 years were hospitalised with juvenile arthritis over the last 20 years, requiring over 11,000 hospital visits to manage their condition and other health issues or complications.

Associate Professor Ruth Colagiuri AM, JAFA founder and co-investigator on JIA-KidsLink,  said the landmark research projects represents an important move forward for families.

“JAFA is delighted to have leveraged this unprecedented research funding for juvenile arthritis and is extremely excited about these two projects which will provide vital evidence to inform policy and practice to improve knowledge and understanding of this painful disease.”

“Most importantly, it will ultimately improve the lives of the children in Australia who suffer from it.  It is also wonderful to see a number of JAFA consumers actively engaged in these projects as investigators.”

Declaration: The research studies are subject to ethics and regulatory approval.