First formed to establish clinical trials in childhood cancer, research has always been an integral part of CCLG’s work. Ellie Ellicott, CCLG Research Communications Executive, tells us more about its research journey and how the experiences of those that matter the most are helping shape future directions.
As recently as the late 1970s, doctors didn’t know much about childhood cancer or how to treat it. At this time, fewer than three in 10 children survived cancer. There were no specialist childhood cancer doctors and nurses, no specific training and no specialist hospitals.
The organisation that would become CCLG, the UK Children’s Cancer Study Group (UKCCSG), was founded in 1977. It aimed to establish clinical trials for children and bring experts together to learn about childhood cancer. At the time, there were almost no clinical trials available for children with cancer, few childhood cancer survivors lived past 18 years old, and paediatric oncologists were only just starting to be recruited.
The UKCCSG set up their first clinical trials in the 1980s for children with brain tumours, Ewing sarcoma, germ cell tumours and Wilms’ tumour. This decade also saw research nurses being hired and designated wards and clinics for children with cancer. The group was the ‘voice of paediatric oncology’ in the UK, pushing for improvements for their young patients.
By 1990, over 80% of children with cancer were treated at UKCSSG treatment centres and there was much more data available to those researching childhood cancer. The national registry of childhood cancer patients, set up by the UKCSSG in the late 1970s, now included over 14,000 patients, and the new Tissue Bank meant that cancer tissue samples were easily available to researchers for the first time.
By the 2000s, over 25,000 survivors of childhood cancer were living in the UK and seven in 10 children could be cured of their cancer, in part due to the research studies launched by the UKCCSG. After merging with the UK Childhood Leukaemia Working Party to form CCLG in 2006, the hard work continued. Though no longer responsible for clinical trials, we were determined to continue developing research and in 2015, we launched our very first research strategy. Since then, we’ve funded over 250 research projects, helping to find new and kinder treatments into even the rarest types of cancer.
With there now being over 40,000 survivors of childhood cancer, there’s an increasing focus on finding kinder treatments that won’t leave patients with long-term problems, like learning difficulties or hearing loss. There’s also a focus on involving the people that matter the most – young patients, survivors and their families – in helping shape the future different direction of our research, gathering their views and opinions to understand what’s important to them.
That’s why, alongside The Little Princess Trust, we funded the Childhood Cancer Priority Setting Partnership in 2019. The goal was to make sure that research projects aligned with the priorities of those affected by involving patients, families and healthcare professionals. Earlier this year, we launched a final report detailing the top 10 research priorities and how they were reached. They covered topics such as why children relapse, kinder treatments and how to improve the hospital experience. The focus is now on making sure these priorities are turned into real research projects going forward and some childhood cancer research charities, including CCLG, have already asked any researchers applying for funding to meet one of the priorities with their research proposal.
CCLG has come a long way since the early days of the UKCCSG, but we’re determined to keep making progress so that every child with cancer not only survives but does so free from the long-term effects of their treatment.
From Contact magazine issue 100 - Autumn 2023
