21st March 2023
LAUNCH OF NATIONAL REGISTER OF JUVENILE ARTHRITIS
Australia’s first national Juvenile Arthritis Registry (AJAR) has today been launched at an event in Parliament House in Canberra, representing an important milestone for children with the painful and disabling condition.
The registry is a partnership between Juvenile Arthritis Foundation Australia (JAFA), the Australian Paediatric Rheumatology Group and the Australian Arthritis and Autoimmune Biobank (A3BC)
Its establishment fulfils a key objective to gather accurate information about juvenile arthritis and to have a dynamic national registry, in line with other conditions such as childhood diabetes and cystic fibrosis. The registry will provide accurate information to inform efforts to secure improved services for children and young adults with JA and childhood rheumatic diseases.
Speaking at the launch, JAFA co-founder and director Professor Stephen Colagiuri AO said, “As well as leading paediatric rheumatologists, many parents have supported the registry project by providing comment and advice on the data to be collected and the consent process and ensuring meaningful consumer input into the registry. One of JAFA’s contributions will be to facilitate and support self-enrolment through its social networks and continue to press for long term funding.”
The registry was launched by Assistant Minister for Health Ged Kearney, Dr Mike Freelander MP and Anne Webster MP, with many parliamentary friends of arthritis in attendance.
The registry was a recommendation of last year’s parliamentary inquiry into juvenile arthritis and is a significant platform to advance the work being undertaken by JAFA to fill serious gaps in diagnosis, care and treatment of children with the disease.