A big milestone has been achieved with the official launch of the Australian Juvenile Arthritis Registry (AJAR) at the Australian Parliament House in Canberra on Tuesday 21st March 2023. The AJAR is a national registry that aims to gather key information on Australian children and young adults with juvenile arthritis (JIA) and other rheumatic diseases of childhood, for the purpose of better describing the extent of these conditions and the magnitude of their health and societal impact.
The breakfast event was jointly hosted by The Juvenile Arthritis Foundation (JAFA) and Arthritis Australia with the support of the Parliamentary Friends of Child & Adolescent Health & Mental Health and the Parliamentary Friends of Arthritis. The A3BC is delighted to be providing the data infrastructure and project support for this important initiative in collaboration with partners, JAFA and the Australian Paediatric Rheumatology Group (APRG) of the Australian Rheumatology Association.
Thanks to MPs @gedkearney, @Louise_Pratt, Dr Mike Freelander, @polley_helen, Anne Webster and @JAFAforkids families for supporting the launch of the 1st national registry to build vital data to help Aussie kids with #juvenilearthritis. #jafa #juvenilearthritisweek pic.twitter.com/9Ztnv6Zriq
— JAFA (@JAFAforkids) March 21, 2023
Wonderful to be at the launch of the Juvenile Arthritis Register at the Parliamentary Friends of Arthritis breakfast.
Kids get arthritis too
Let’s make a difference to their care@gedkearney @Mark_Butler_MP @JAFAforkids @ArthritisAust @lynmarch1 @TheA3BC
@RachelleBuchbin 1/10 pic.twitter.com/0r0yCniygQ— Jane Munro (@DrJaneMunro) March 21, 2023
There was an impressive turnout from families and children living with juvenile arthritis, along with a range of leading clinicians, researchers and consumer groups from across the country, including many A3BC investigators and collaborators.
The registry was launched by Assistant Minister for Health and Aged Care Ged Kearney, Dr Mike Freelander MP, and Anne Webster MP. They were joined by Professor Stephen Colagiuri AO (JAFA) and Professor Lyn March AM (A3BC) who highlighted how “we don’t really know how many children have these conditions in Australia, and if we can’t count it, these conditions can seem invisible and people will continue to think that children don’t get arthritis.”
We look forward to working with patients, families, and partners to advance this important work, a key pillar of the A3BC Centre of Research Excellence for Better Outcomes in Inflammatory Arthritis.
For more information on AJAR please see the FAQs page: https://a3bc.org.au/ajar-faqs/.
The enrolment page for self-referral into the registry will open from 1st April 2023.
