Why was a national centre for children so important, leading to the development of the EATC4Children?
The EATC4C was an important part of our range of funding for research centres around the country focussing on a variety of different research themes. More than 12,000 young people in the UK live with arthritis or associated musculoskeletal conditions. Beyond the stigma of having what many wrongly assume to be a condition of older age, having arthritis as a young person comes with unique challenges. It was an important objective to bring additional support to the area of paediatric rheumatology and experimental medicine, recognising that research in this area is a distinct area of interest with specific research questions and challenges.
The voice of children and young people, and their families, have been the strongest and loudest champions of the EATC4Children since its conception. How important is the voice of children and young people to the forward strategy of Versus Arthritis in improving their care and the understanding of the conditions affecting them?
The voice of children and young people, and their families, is incredibly important to the forward strategy of Versus Arthritis. Our Young People and Families Service has offered 121 support and group activities for children and young people, as well as their parents and wider family, for over 20 years. It is a service shaped every day by the needs and hopes of the young people and families we work with in hospital settings and communities across the four nations.
The service: empowers young people to take control of their care – particularly as they transition from paediatric to adult care; advocates for the needs of young people when they need one; as well as supporting young people and families to get involved in projects that will drive change in standards of care locally and nationally.
Our young people and amazing volunteers help to co-design and deliver our support services and campaigns. Our Young Experts help to create new, informative resources. Our Young People’s Panel, project groups and panels help shape our charities work around campaigning, support and research priorities.
We can’t thank them enough for being passionate champions for better care and greater understanding.
Why is experimental medicine important to Versus Arthritis?
Experimental medicine is a key pillar underpinning the Research Strategy, Better Lives Today, Better Lives Tomorrow, 2022-2026. The importance of experimental medicine is that when done well and resourced properly, it provides a powerful means of accelerating the testing and delivery of new treatments.
Here our Director of Research says “This strategy is striving for Pace and Precision. Our four priority areas are driven by the need to bring ground-breaking scientific discoveries directly to people with arthritis at pace and with precision – more and better interventions for quicker and more accurate diagnoses, targeted and timely treatments and personalised approaches to care.”
We have ensured the EATC4C is included in the UK Musculoskeletal Translational Research Collaboration. This collaboration between the National Institute for Health and Care Research and Versus Arthritis brings together centres to drive cutting edge research working towards development of new diagnostics and treatments.
It is important to build the next generation of experimental medicine leadership through clinical and scientific research postdoctoral and PhD programmes. We must expand the range of trials and studies conducted and recruit specialist staff, including paediatric trial nurses and clinical researchers.
The EATC4Children manages to leverage a very significant amount of additional funding from other funders and charities, building on the crucial core funding received from Versus Arthritis. How important is this to Versus Arthritis in supporting children and young people’s research across the country and beyond?
A key priority of our latest research strategy is “People and Partnerships”. Versus Arthritis as a charity is looking to ensure that moving forward much of our research is delivered in partnership with other organisations. Like many of our investments in research centres, Versus Arthritis core funding is used by the EATC4C to leverage support from other organisations to maximise charity funding and research outputs for both Versus Arthritis and other partners. We see this as an important part of our funding model moving forwards as we look to deliver our research strategy.
As the only national centre for children, what are the important gaps in the translational pathway from bench to bedside and back again that Versus Arthritis sees the EATC4Children fill?
Versus Arthritis is very keen to see translational research being undertaken and strongly encourage that investigators facilitate scientific developments making an impact upon patients as soon as possible. We endeavour to fund research that can turn observations in the laboratory, clinic and community into interventions that directly improves the health of individuals and populations.
The breadth of experience and expertise at the EATC4Children means that this translation of discovery to more applied trials as well as taking insight from the clinic back to the laboratory is built into the ethos of the Centre.
What do you see as the greatest achievements of the EATC4Children since it started in 2014?
Work associated with the EATC4Children has included various impactful trials such as the Sycamore study investigating drug combinations in Uveitis associated with Juvenile Idiopathic Arthritis and important registries in rare diseases. In addition, the EATC4Children strongly engages children and families with research. We want the lived experience of people with arthritis to inform research and care provision – taking and translating the experience and voice of people with arthritis back to the laboratories and clinics. Members of the EATC4Children have also contributed to important aspects of clinical guidance as well as research priority setting for paediatric rheumatology.
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