The Yorkshire Cancer Register
Cancer in young people is very different to cancer in adults. While adult cancers are dominated by the 'big four' (breast, bowel, prostate, and lung cancer), cancers in children and young people are very diverse. Certain types of cancer are only ever seen in childhood and some of these can be aggressive and difficult to treat.
To better understand cancer in young people and how we can improve treatment and survival, research studies need large numbers of people involved. But because there are so many different types of cancer affecting young people, and each one is relatively rare, it can be difficult to recruit a large enough number of children for these studies. Because of this, lots of studies are too small to draw definitive conclusions or are unable to happen.
The Yorkshire Specialist Register of Cancer in Children and Young People
The Yorkshire Specialist Register of Cancer in Children and Young People is a database holding rich information on more than 10,000 people diagnosed with cancer as children or young adults since the 1970s. Set up by Professor Patricia McKinney at the University of Leeds in the mid-1980s with funding from Candlelighters, the register is helping to address gaps in knowledge and understand the long-term impacts of childhood cancer.
Every year, the register collects information on around 100 children and 250 teenagers and young adults newly diagnosed with cancer in Yorkshire. This information is collected from health records and other sources and anonymised so that no individual person can be identified from it. Scientists can then use the data in the register to study cancer in this group, providing results that can then be applied to children and young people being treated today and in the future.
The register is currently led from the University of Leeds by Professors Richard Feltbower and Adam Glaser. Candlelighters continues to support the register, providing funding for staff to manage the ongoing collection of data, as well as statisticians and PhD students to analyse the data.
Leading the way
The register is well-respected around the world, providing a very valuable resource for researchers everywhere. Professor Adam Glaser says, “This is the most comprehensive register of young people diagnosed with cancer in the UK. Whilst there are other children's cancer registers, they don't collect as much data as us – not as deep, not as wide, and not as broad.”
The data on the register dates back to 1974 and shows great progress in survival rates for children. Now for children under 15 diagnosed with cancer in Yorkshire, 86% will survive for five years or more, up from 73% in 1997. The survival rates for young people with cancer in Yorkshire are among the best in the world. But again, looking at the register, we can see other factors which impact survival for children and young people. Survival of some types of cancer, like brain or bone tumours and neuroblastoma has not yet caught up with others. Survival can be impacted by whether treatment is delivered at a Principal Treatment Centre for children's cancer or elsewhere. And research carried out using data from the register has revealed a survival gap between different ethnic groups in our region. It's not clear why this is the case. But thanks to the register highlighting inequalities in survival, researchers can now investigate why. This will help to adapt and improve services to make sure that every child diagnosed with cancer has the best possible chance of survival.
As well as giving valuable insight into survival, the register is helping to understand the longer-term effects of being diagnosed with cancer as a child. With some of the children now in their 50s and 60s, researchers can begin to get a clearer picture of the lifetime after-effects that patients face. The register is the only way the long-term impact of childhood cancer can be understood. And by looking back at the factors affecting a person's survival and quality of life, doctors and medical professionals can change the treatment and support given to patients today to improve their outlook for the future. A long-term view of cancer requires long-term support, which Candlelighters has given for the last four decades.
The register has directly enabled understanding and recommendations for:
- Where children are treated
- Factors influencing long-term health
- Long-term impacts on mental health
- What research is needed to understand and address inequalities in survival
With every passing year, the data on the register grows and becomes more valuable. Candlelighters continues to fund the running of the register and we look forward to seeing the continued progress made in understanding children's cancer thanks to this important resource.
The life-changing research we fund is all thanks to support from donations and fundraising. We receive no government funding and only a small proportion of national cancer research funding is spent on researching children's cancers. Your support is vital to continue making progress. If you'd like to support our research, please donate today.
