International Childhood Cancer Day – the importance of data in childhood cancer research
Whilst childhood cancer is thankfully relatively rare, one in 430 children will develop some type of cancer before they are 15 years of age. The promising news is that survival rates for children’s cancers have dramatically improved in recent decades. Fifty years ago in the UK, four in 10 children diagnosed with cancer survived the disease for five years. Now that figure has jumped up to more than eight in 10, thanks to research and improved treatments. 
My speciality is Wilms tumours – a type of kidney cancer in children that affects about 85 children a year in the UK and is one of the commonest solid tumours in children. Today, nine out of 10 children with this type of cancer will survive – three times the number surviving back in the 1950s.
As we mark International Childhood Cancer Day, it is important to recognise the steps that are being taken globally to combat children’s cancers. 90 per cent of the world’s children live in low and middle income countries where childhood cancer services are fewer and less accessible. In these countries, survival rates vary from 20 per cent or less, rising to 60-70 per cent in the best institutions. Few countries have cancer registries that can provide accurate information on survival.
The World Health Organisation’s Global Initiative for Childhood Cancer aims to achieve at least a 60 per cent survival rate for all children with cancer by 2030, thereby saving an additional one million lives. Wilms tumour has been chosen as one of six ‘tracer’ cancers which they are asking national governments to use to monitor improvements in survival.
Cancer research into new treatments and drugs to combat cancer will clearly be vital if we are to improve childhood cancer survival rates in line with the WHO’s ambitions. And data is one of the most important and vital aspects of any research study and cancer research is no exception.
Despite the UK having one of the richest health data ecosystems, and one of the best cancer registries in the world, it is not always easy for researchers to access and analyse relevant health data in a timely manner. Datasets can be hard to find, incomplete and sometimes of poor quality. They are often held in separate databases, and difficult to access due to lack of clarity about information governance, costs and restrictions to use.
DATA-CAN is working to improve this. Our mission is to unlock the power of data to improve patient care. We want to make it faster and easier for researchers to bring together and interpret health data from across the NHS securely.
One important way that we are doing this is through the Health Data Research Innovation Gateway. The Gateway is a secure online portal enabling researchers to discover and request access to anonymised datasets on a wide range of conditions and patients. It is a bit like a national catalogue of what datasets are available.
The Gateway includes information about datasets from my own specialism of Wilms tumours. The dataset describes anonymised data on 670 children with this type of kidney cancer, representing more than 90 per cent of all cases in the UK and Republic of Ireland diagnosed in the last eight years. The aim of making this dataset more visible, as well as its linkage possibilities to routine health care data, is to help other researchers in their work on outcomes and provision of new treatments for children with this type of cancer.
By making datasets like this one, and others, more widely available we hope to continue to support cancer researchers, in the UK and globally, in their efforts to improve patient care and services, and continue to improve survival rates for children with cancer.
Prof Kathy Pritchard-Jones is DATA-CAN’s clinical lead for London and for cancer in children and young people. She is one of the UK’s foremost experts in childhood cancer, professor of paediatric oncology at the UCL Great Ormond Street Institute of Child Health and honorary consultant oncologist at Great Ormond Street Hospital for Children NHS Foundation Trust.
1. SIOP Strategy 2021-2025