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Great Ormond Street Hospital (GOSH) Charity has joined forces with Cancer Research UK (CRUK) to co-fund two projects that will use data science to advance research into childhood cancers.

Through the D4CYP Pilot Award scheme, Professor Anindita Roy will create a national database to collate patient information and research data for babies with ALL

Understanding infant acute lymphoblastic leukaemia, led by Professor Anindita Roy, at the Department of Paediatrics is one of the projects being funded by the Data for Children’s and Young People’s Cancer (D4CYP) Pilot Award scheme. The other is Analysing recurrent childhood, teenage and young adult cancer, led by Dr. Martin McCabe at the University of Manchester.

Cancer in children and young people is different to cancer in adults. It requires a dedicated approach to care, treatment and research. GOSH Charity is committed to funding childhood cancer-related research projects to give more young people the best possible chance. It will contribute £250,000 in total, split across the two projects.

Understanding infant acute lymphoblastic leukaemia

Leukaemia is the most common type of childhood cancer. And acute lymphoblastic leukaemia (ALL) is the most common type of leukaemia identified in children, with around 440 children diagnosed in the UK each year.

Infant ALL – when the child is younger than one – occurs in about 12 to 15 babies in the UK each year. Although the disease is statistically rare, for the clinicians treating it and families affected it represents a significant and personal challenge.

There is currently no national clinical trial for babies with infant ALL in the UK. This means that there is a lack of data, because it is not being collected in a systematic manner as it would be for other age groups who are part of national and international trials.

Through the D4CYP Pilot Award scheme, Professor Anindita Roy will create a national database to collate patient information and research data for babies with ALL. This will help to better understand the disease and improve clinical outcomes.

Professor Roy’s team, which includes Co-PI Dr Jack Bartram, GOSH Consultant in Paediatric Haematology and Andrew Blake, Data Platform Development Lead at the Department of Oncology at Oxford, aims to identify unique markers that can predict how patients respond to treatment and help guide doctors in choosing the most effective treatment.

Excitingly, Professor Roy believes a kinder treatment protocol for infants with ALL is currently being used as part of a national guideline, but data needs to be collected from these patients during and after treatment to be sure it is safe and effective.

The team will also use the database to hold parent-reported outcomes, so that the family perspective of childhood cancer can be better understood.

“Just because a disease is rare, it does not mean that it should be neglected,” Professor Roy says. “There is a lot of data sitting in different places, and this project aims to pull it all together so that we can guide and inform the best clinical care.

“The ultimate goal is personalised therapies for these babies. Even though they’re a small cohort, their disease is quite heterogenous and not all of them respond the same way – 50% will relapse, and we don’t know why. But those are the things we hope to be able to pick up really early and change the treatment plan accordingly.” 

Analysing recurrent childhood, teenage and young adult cancer

Although 85% of children and young people with cancer in the UK survive long term, some cancers have persistently high recurrent rates – even with the right treatment.

Unfortunately, not a lot is known about the best way to treat childhood cancers that relapse. This means that the treatment of recurrent disease varies across the country.

Improving the chances of survival for children and young people with relapsed or recurrent cancers is challenging. This is due to a lack of large-scale studies that could guide treatment decisions when cancer returns. Additionally, there needs to be greater understanding of how the UK compares internationally. And important data is often kept in separate places, making it hard to get a complete picture.

Through their GOSH Charity co-funded project, Dr Martin McCabe and his team hope to develop new data links between diagnostic, research and treatment datasets. By bringing this data together, the team hope to gather more information to understand how recurrent cancer in children and young people is treated in the UK, how successful treatment is, what proportion of patients have access to advanced genetic testing, and the impact of this testing on determining future treatment.

This insight will be critical to optimising access to personalised medicines in difficult to treat, recurring cancers.

“This will be the first real-world national population analysis of treatment and treatment-related survival data for relapsed childhood and young adult cancer in the world.  It provides huge potential for international impact given the scarcity of disease and lack of treatment-specific data in the literature for relapsed childhood cancers,” Dr McCabe says.

In addition, “if we find that certain patient groups are routinely disadvantaged in the treatments they receive or access to advanced genetic testing based on geography, ethnicity or deprivation, the expertise and input of patient advocates will be critical in developing a plan of action to develop change”.

Investing in data infrastructure at GOSH

GOSH Charity's investment in the D4CYP Pilot Award scheme reflects its commitment to funding data infrastructure projects that drive positive transformations in children’s health.

GOSH is one of the most digitally advanced hospitals in Europe and aims to use data and digital technologies to improve patient care and staff experience. The GOSH Data Research, Innovation and Virtual Environment (DRIVE) unit, established in 2018, is a centre of engagement for innovation. At the GOSH DRIVE unit, data scientists support teams to leverage clinical and operational data using its secure, trusted Digital Research Environment (DRE). The world-leading DRE was established thanks to vital funding from GOSH Charity. 

GOSH Charity continues to fund the Clinical Informatics Research Programme (CIRP) based in DRIVE. This is an extensive research programme supporting clinicians, nurses, allied health professionals, and data scientists to collaborate on data driven research projects that aim to improve child health outcomes. The programme builds vital skills and evidence for the application of novel technologies in healthcare, supporting GOSH and academic partners to lead cutting-edge digital innovation.

GOSH Charity is also funding a programme of work relating to the new Children’s Cancer Centre to transform cancer clinical services at GOSH. One of these workstreams is ‘Data and Digital Information’. A Cancer Data Lead is now in post and will develop a cancer performance dashboard, report cancer outcome data, and develop patient reported experience measures.

The CRUK D4CYP Pilot Award

The CRUK D4CYP Pilot Award is designed to generate new insights about children’s and young people’s cancers, and to translate these findings into benefits for cancer in a way that leaves a legacy for research that comes afterwards. 

The scheme provides up to two years of seed funding, with up to £250,000 per project. There are eight teams in total, who will share learnings and drive the kind of research data culture that enables inclusive and exceptional international data-driven research to better understand and treat cancer in children and young people.

Learn more about the D4CYP Pilot Award here

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