Collaboration advances research into childhood cancers

As September is Childhood Cancer Awareness Month in the UK, it is a good time to highlight the work being done in research and clinical trials, review developments to date, as well as spotlight what more needs to be done to help fight childhood cancers.

By streamlining scientific research, increasing funding and collaborating with different stakeholders (including patients and doctors), innovation of new cancer treatments can be expedited. Recognising the value of progress in this field as well as breakthrough technologies will propel medical science forward and ultimately lead to a cure for cancer.

Initial research on childhood leukaemia in the US, for example, led to breakthroughs that aligned stakeholders, and to trials and advances that have saved countless lives since the 1950s1. In the mid-1950s, three children’s cooperative groups – Acute Leukaemia Group A (eventually Children’s Cancer Group [CCG]), Acute Leukaemia Group B (which became Cancer and Leukaemia Group B [CALGB]), and the Southwest Cancer Chemotherapy Study Group (which evolved into the Southwest Oncology Group [SWOG]) – were formed in rapid succession.

Multi-institutional collaborations were developed to ensure that researchers were coordinating research2, and the first chemotherapy drugs were developed for lymphoma and leukaemia patients, including children. Recognising the potential of this research, the US National Cancer Institute3 provided substantial funding, and development of clinical trials has enabled doctors to refine their use and dosage of drugs, resulting in greater survival rates. Research found that selecting therapy based on patient and disease-specific prognostic factors resulted in significant improvement in outcomes for childhood leukaemia and, in an example of a progressive innovation leading to a potential breakthrough, this novel approach has been adopted for adults over recent years, and is showing favourable results.


“The three most common cancer types in children are leukaemia, brain, other central nervous (CNS) and intracranial tumours, and lymphomas”

According to Cancer Research UK, the highest incidence rates for all childhood cancers combined in the UK are in the under-fives for both sexes, with almost half (47 per cent) of all childhood cases being diagnosed in this age group4. The three most common cancer types in children are leukaemia, brain, other central nervous (CNS) and intracranial tumours, and lymphomas. Leukaemia is the most commonly diagnosed cancer in children, accounting for around a third (30 per cent) of all cases (31 per cent and 29 per cent in boys and girls, respectively) in Great Britain between 2006 and 2008.

Fortunately, cancer in children and young people is rare. In the UK, only 1 in every 500 children under 15 develops cancer, and around 1,600 children (up to the age of 15) in the UK are diagnosed with cancer each year, according to Macmillan Cancer Support. Thanks to investment in research and treatment, survival has increased dramatically over the past 50 years and 82 per cent are now cured, compared with less than 30 per cent between 1962 and 1971. Research is continuing to improve treatments and reduce side effects. Macmillan Cancer Support estimates that there are at least 35,000 people in the UK diagnosed with a childhood cancer who have survived more than five years.


“Children with Cancer UK is partnering with the Brain Tumour Charity and Great Ormond Street Hospital Children’s Charity to fund a £4 million programme of work”

Despite this ‘good news’ in treatment advances and higher cure rates, a diagnosis of childhood cancer is devastating for any family. Brain tumours are the leading cause of death from cancer in childhood. Children with Cancer UK is the leading national children’s charity dedicated to the fight against all childhood cancers and is partnering with the Brain Tumour Charity and Great Ormond Street Hospital Children’s Charity to fund a £4 million programme of work, across three of the UK’s leading paediatric neuro-oncology centres, to progress research into some of the deadliest brain tumours and improve outcomes for young patients.

The story of Ashya King, a five-year-old boy from England with a brain tumour, has catapulted the issue of childhood cancers into the headlines recently.

Ashya was being treated at Southampton General Hospital in August 2014 for a medulloblastoma, the most common type of malignant brain tumour in children. The Kings wanted their son to have proton beam cancer therapy, which is not available on the NHS, and found themselves at loggerheads with medical professionals in England, who believed that their son’s chances of recovery with regular treatment were ‘very good’ and that proton radiotherapy wouldn’t offer any benefit over standard radiotherapy.

He was removed from hospital by his parents without the consent of doctors, and the family left the UK in search of a centre which would perform the proton beam therapy. UK police then issued a warrant for their arrest, resulting in Ashya’s parents being detained in Spain. Common sense eventually prevailed, and the King family was allowed to take Ashya to the Czech Republic where he is now undergoing proton beam therapy at a specialist clinic.

The case of Ashya King also focuses the spotlight on children’s participation in decisions about their treatment and clinical trials. In the eyes of the law, children under 18 are not adults; therefore, legal permission for their participation must be given by parents or guardians after following the informed consent process on their behalf.

The National Commission for Protection of Human Subjects of Biomedical and Behavioural Research established age seven as a reasonable minimum age for involving children in some kind of assent process. It is felt that most children of this age can understand information, provided that it is tailored for their knowledge and developmental level.

Healthcare providers want children and young people to know that they have a say in what happens to them and that their questions and input are valued. Encouraging their involvement in decision-making is done out of respect for their rights as individuals and the desire to give them a sense of ownership in what happens during the trial. Even though children cannot ‘consent’, because true consent implies full understanding, they are now routinely asked whether they agree (assent) or do not agree (dissent) to participate.

Ashya’s parents were told that the tumour could kill him in months and that prolonged treatment might save his life, but leave him with brain damage that would cause serious impairment. As the mother of a one-year-old, I’m sure that faced with this situation, I would also have searched for miracle cures that had even the remotest chance of saving my daughter and if I felt this particular therapy was the best chance for my child would have found any means possible to ensure she received it.

No family should have to hear words about their child’s future that will shatter their world, so as September, and Childhood Cancer Awareness month, draws to a close, it’s clear that while great work is being done through research and clinical trials, there is still a long way to go in terms of detecting and curing all childhood cancers in their early stages, with access, communication and coordination being key.


1. Curing Pediatric Acute Lymphoblastic Leukemia. American Society of Hematology. December 2008. Last accessed March 4, 2014. Available here.

2. Past, Present, and Future: Research and Treatment Advances in Pediatric Cancers. Memorial Sloan Kettering Cancer Center. September 26, 2013. Available here.

3. Childhood Leukemia Survival Rates Reach 90 Per cent. HealthDay. 12 March, 2012. Last accessed 4 March, 2014. Available here.

4. Data provided by the Office for National Statistics on request, July 2013. Similar data can be found here.


About the author:

Louise Bellamy is senior manager, Healthcare Partners at pharmaphorum. Louise’s background is in project management, having worked for almost 10 years across a number of industries, including market research, translation and publishing. Healthcare Partners is a unique, educational programme focusing on innovation in cancer launching early 2015. You can find out more at or @hc_partners.

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