Nottingham experts support Rare Disease Day

A young patient and her mum at the Children's Brain Tumour Research Centre
29 Feb 2012 12:48:29.773
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Experts in Nottingham are using Rare Disease Day 2012 to raise awareness of the symptoms of children’s brain tumours and to call for urgently needed funding for research into this devastating disease.

Professor David Walker of The University of Nottingham’s Children Brain Tumour Research Centre (CBTRC) said the global event on February 29 presented the ideal opportunity to remind parents and carers to be vigilant for the signs of brain tumours, as early diagnosis could potentially save their child’s life.

Professor Walker said: “Brain tumours in young people are comparatively rare and we are not trying to cause parents unnecessary alarm. However, they do happen and, because the symptoms often mimic other common less serious illnesses they can be very difficult to diagnose.
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“It is important for parents to be aware of the signs and if they spot any worrying symptoms in their child which come back frequently or are lasting for more than two weeks then they need to see their family doctor to have them investigated.”

Every year, around 450 children in the UK are diagnosed with a brain tumour. Survival rates for childhood brain tumours in the UK are among the lowest in Europe. On average, children in the UK wait up to three times longer for a brain tumour diagnosis than those in other developed countries — a delay which can make long-term survivors up to 10 times more likely to suffer disability.

The most typical symptoms of brain tumour in children and young people include:
• Persistent or recurring vomiting
• Persistent or recurring headaches
• Deteriorating vision
• Blurred or double vision
• Poor balance and co-ordination
• Abnormal eye movements
• Fits or seizures
• Behavioural changes, especially tiredness

In older children or teenagers, symptoms can also include slow or late start of puberty.

The CBTRC is one of the leading centres in the country studying children’s brain tumours. It conducts pioneering research into genetic abnormalities of brain tumours, novel imaging techniques and drug delivery. It also focuses on diagnosis, innovative treatment and raising awareness and its research findings guide developments in research and clinical practice and inform national and international healthcare policies in the fight against childhood brain tumours.

Last year, it joined forces with the Royal College of Paediatrics and Child Health (RCPCH) and the Samantha Dickson Brain Tumour Trust to launch the national Headsmart campaign, which aims to raise awareness of brain tumour symptoms by helping parents and health professionals spot the signs of brain tumours in children and young people.

To do this the HeadSmart campaign has launched a range of resources, including a website, leaflets and a pocket-sized ‘symptoms card’ to provide information for doctors, parents, carers and young people.

Professor Walker and colleagues at the CBTRC have been vocal in highlighting how a lack of vital funding for research is threatening new developments in diagnosing and treating rare brain tumours in children.

Sophie Wilne, a consultant in paediatric oncology at the CBTRC, recently spoke on the issue at the EU Parliament at an event organised by Glenis Willmott, MEP for the East Midlands, to mark International Childhood Cancer Day.

In a recent entry to her blog, the MEP calls for more action to help youngsters with childhood cancers, starting with a review of the EU Clinical Trials Directive to streamline the process of applying for a clinical trial for researchers working collaboratively with peers in other European countries.

The centre is also one of the projects set to benefit from the Impact Campaign, the biggest fundraising campaign in The University of Nottingham’s 130 year history. It aims to raise £150m to transform research, enrich the student experience and enable the institution to make an even greater contribution to the global communities it serves.

Rare Disease Day 2012 is an annual, awareness-raising event coordinated by EURORDIS, a non-governmental alliance of patient organisations and individuals, and the National Alliances of Patient Organisations.

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Notes to editors: The University of Nottingham, described by The Sunday Times University Guide 2011 as ‘the embodiment of the modern international university’, has 40,000 students at award-winning campuses in the United Kingdom, China and Malaysia. It is ranked in the UK's Top 10 and the World's Top 75 universities by the Shanghai Jiao Tong (SJTU) and the QS World University Rankings. It was named ‘the world’s greenest university’ in the UI GreenMetric World University Ranking 2011.

More than 90 per cent of research at The University of Nottingham is of international quality, according to the most recent Research Assessment Exercise. The University’s vision is to be recognised around the world for its signature contributions, especially in global food security, energy & sustainability, and health. The University won a Queen’s Anniversary Prize for Higher and Further Education in 2011, for its research into global food security.

Impact: The Nottingham Campaign, its biggest ever fund-raising campaign, will deliver the University’s vision to change lives, tackle global issues and shape the future. More news

Story credits

More information is available from Professor David Walker on +44 (0)115 823 0632,

Emma Thorne Emma Thorne - Media Relations Manager

Email: Phone: +44 (0)115 951 5793 Location: University Park

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