The Children’s Brain Tumour Research Centre

By Nabeela Bhaloo

This week, 10 children will find out that they have a brain tumour1.  This news will change their lives forever, as brain tumours are the largest cause of childhood cancer deaths in the UK2. Though survival rates are improving, many children are left with disabilities or deficits; side effects from the aggressive treatment required to save their lives3.  For the past 20 years, the internationally renowned Children’s Brain Tumour Research Centre (CBTRC) has been working to change this.

childrens brain tumour 1

Despite the fact that more children die of brain tumours than any other cancer4, total national spending allocated to brain tumours was reduced to just 1.37% in 20155.  This is nowhere near enough funding; the CBTRC is forced to rely on research grants and donations to continue its life-saving work. I was devastated to learn about the challenges that children with brain tumours face, and even more upset when I realised the sheer lack of financial resources. This is what inspired me to sign up to run the Robin Hood Half Marathon on September 24th in support of the CBTRC, along with nearly 500 members of the University community. This event is part of the Life Cycle 7 initiative, which is aiming to raise £500,000 for the CBTRC.  Past fundraising events include the “Great Notts Bike Ride”, skydiving, and a trek along the Great Wall of China. Although I know that running 21.1 kilometres will be difficult, I also know that raising funds to make a difference to the lives of children with brain tumours is incredibly rewarding. Even more motivating is the fact that every donation triples the research funding that the CBTRC receives by attracting further external grants6.

Based at the University of Nottingham and led by Professors David Walker and Richard Grundy, the CBTRC was established in 1997 as part of the University’s Golden Jubilee Development Campaign. There are currently a variety of projects being conducted by a multidisciplinary team of researchers and healthcare professionals, who are leading experts in fields such as neurosciences, oncology, and cellular genetics. Many of these projects are focused on developing an increased understanding of the underlying biology of the tumour cells. For example, the molecular neurogenesis and neuro-oncology team is challenging the traditional belief that germ cell tumours originate from misplaced germ cell progenitors, and theorising that they actually arise from existing neural stem cells7.  Researchers working on the Genomic Characterisation project are using cutting-edge technology to understand tumour pathogenesis pathways and possible novel targets for therapy based on biological and genetic alterations in tumours.  By identifying specific tumour markers, researchers will be able to make predictions regarding how tumours will behave and whether they will be sensitive to treatment, allowing for a treatment plan tailored to each patient. Their work includes developing three-dimensional models representing the behaviour of cancers in real-life. All of these findings will be applied to clinical practice to improve outcomes for children with brain tumours8.

Other projects are focusing on improving the diagnosis and management of children’s brain tumours. In children, they often present with varying signs and symptoms, making them hard to recognise. In addition, there is a lack of awareness about them amongst healthcare professionals and limited access to brain scans. This means that symptoms suggestive of a brain tumour, such as persistent headaches, behavioural changes, and visual problems, are often overlooked. Children may suffer with these symptoms for months before being diagnosed, an important issue when you consider that earlier diagnosis and treatment increases the likelihood of survival and decreases the risk of developing a long term disability. In 2007, the CBTRC developed the “Diagnosis of Brain Tumours in Children” Guideline. In order to raise public awareness about the signs and symptoms of brain tumours in children, the “HeadSmart” campaign began as a partnership between the CBTRC, the Brain Tumour Charity and the Royal College of Paediatrics and Child Health. One aspect of the campaign involved creating age-stratified lists of symptoms and suggesting that children with 1 symptom required medical assessment, and those with 2 symptoms required an urgent referral. Materials were distributed not only to healthcare professionals, but also to the public through local schools, nurseries, GP surgeries and even toy shops, with a focus on raising awareness without causing public alarm. The campaign has been incredibly successful, reducing the average time of diagnosis from 13 weeks to 6.5 weeks (with the eventual goal of reaching an average time of under 4 weeks, in line with NHS Guidelines)9. In addition, a follow-up survey found that after the launch of the guidelines, the confidence of paediatricians in recognising when children might have a brain tumour increased by 12%4. To further improve the diagnosis and management of children’s brain tumours, new imaging techniques such as diffusion/perfusion scanning and high-resolution Magnetic Resonance Spectroscopy are being developed, and over 25 clinical trials are being conducted in collaboration with the Childhood Cancer and Leukaemia Group10 .

Chemotherapy is a mainstay in cancer treatment but treating brain tumours comes with a unique set of challenges. This is because the blood-brain barrier prevents many drugs from reaching the brain, so only a limited number of anti-cancer drugs can be used. To overcome this issue, the CBTRC is launching the world’s first research consortium to develop new drug delivery mechanisms for brain tumours, which include using nanoparticle technology to safely and effectively deliver chemotherapy to the affected tissues11. Unfortunately, the difficulties for children with brain tumours do not end once their tumours are treated.  60% of long-term survivors of childhood brain tumours are left with neurological and neurosensory disabilities, including hearing impairments, blindness, motor problems, and seizure disorders12. This is why the CBTRC is studying the impact of rehabilitation on health outcomes after brain surgery on patients recovering after tumour surgery at the Nottingham Toddler Lab13.

If you would like to get involved with the CBTRC, there are many options. You can visit the Life Cycle 7 website (nottingham.ac.uk/impactcampaign/get-involved/lc/fundraise-for-us) to learn more about upcoming fundraising events, or even organise your own! Alternatively, you can make a donation directly to the CBTRC on their website, or if you would like to help me to reach my goal of raising £300, visit justgiving.com/fundraising/nabeela-bhaloo. Any donations would be greatly appreciated and the money will help the CBTRC to undertake life-changing research and publish it to help others around the world.

References:

1 http://www.nottingham.ac.uk/impactcampaign/get-involved/lc/index.aspx

2 https://www.nottingham.ac.uk/news/pressreleases/2016/july/funding-for-brain-tumour-research-drops-despite-government-commitments.aspx

3 https://www.nottingham.ac.uk/impactcampaign/projects/cbtrc.aspx

4 https://oup.silverchair-cdn.com/oup/backfile/Content_public/Journal/neuro-oncology/18/3/10.1093_neuonc_nov187/2/nov187.pdf?Expires=1502232324&Signature=JoMwnyfnKfSEP5js5mTTYau5mw~DYoZ0r-sw1BdJkPXOqPGVXsymSAe1QYJjbGc6x0kKsTdJ08fpcv8~~pZXJf99JvndD2hqKjvBBkwjhtI-hkxdX5bkTdRvFb4ZLEJOOoafabkq7Nw5u7~enfyTmaS1rhgsokr9EFZ4Z1dUP~na9n7Oo~Z9e181YixmQVfApaKPyKch~2CSwLituHz1Sk82ay6ZbFtPXohBfa4OMZADljz9-Jtm8fzxNt9wGL8uC3icLu0jZtMaeQN9P4~jpwBd0EdnB-NjgVdS~4fBCnvlUH4ukcDQgPaXD9PUy2cDJie0cqxCISyL-pajLp61PQ__&Key-Pair-Id=APKAIUCZBIA4LVPAVW3Q

5 https://www.nottingham.ac.uk/news/pressreleases/2016/july/funding-for-brain-tumour-research-drops-despite-government-commitments.aspx

6 http://www.cbtrc.org/aboutus/aboutus.aspx

7 http://www.cbtrc.org/research/projects/molecularneurogenesisandneuro-oncology.aspx

8 http://www.cbtrc.org/research/projects/molecularanalysis.aspx

9 https://www.headsmart.org.uk/about-headsmart/

10 http://www.cbtrc.org/research/projects/clinicaltrials.aspx

11 http://www.cbtrc.org/research/projects/drugdelivery.aspx

12 https://www.ncbi.nlm.nih.gov/pubmed/12947060

13 http://www.cbtrc.org/research/projects/healthoutcomes.aspx

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