How the EU could help more children survive cancer

May 24, 2013, University of Nottingham

A leading expert in childhood cancer at The University of Nottingham is spearheading a Europe-wide lobby of the European Parliament to try to make it easier for doctors to develop and test new treatments on children and young people with rare cancers.

Every year around 1,500 children are diagnosed with in the UK, and around 15,000 across the whole of the European Union. Most are or , but every is a , which makes them especially difficult to treat. Although treatment has improved greatly, tragically around 25 per cent of children with cancer will die.

Professor David Walker of the University's Childrens' Tumour Research Centre, has campaigned for public awareness of brain tumour symptoms and better research funding for , notably in the national HeadSmart campaign launched in 2011. He has been working closely with two East Midlands MEPs to lobby for changes to planned Regulations currently being discussed in the European Parliament.

One size does not fit all

Professor Walker said: "At the moment the existing EU Clinical Trials Directive is a 'one-size-fits-all' piece of EU legislation, making some academic research particularly difficult. EU countries are still using different standards for clinical trials depending on their interpretation of the law, and this lack of homogeneity makes it very difficult to set up cross-border clinical trials in children with rare cancers which are large enough to be effective in pioneering new treatments and procedures.

"Paediatric oncologists and clinical researchers across Europe welcome the key changes in the new regulation, including a single portal to make applying for clinical trials simpler; allowing co-sponsorship to encourage academic participation in trials; establishing national indemnity schemes to lower insurance costs and differentiating between trials that do not pose additional risks to patients compared to normal clinical practice, and those that do. But more detailed amendments should be included to encourage academia-driven clinical trials, such as clearer definition of 'low intervention trials' involving the experimental use of new combinations and doses of standard clinical practice drugs (off-label use) and other investigational medical products as well as more proportionate Annual Safety Reporting."

Beating the odds

Jane Redman, a press officer at Cancer Research UK whose daughter Amy has been successfully treated for a brain tumour by Professor Walker's team at Nottingham said: "Some of the most exciting developments in cancer research have come from the paediatric community. They were the first to develop combination chemotherapies, they are experts in complex international studies, and their patients cope with treatment regimes of an intensity that would kill an adult. There is so much to be learnt, and so much to be built on so that more children can beat the odds." Jane has written a powerful blog on her experience available on the Cancer Research UK website here.

MEP support

East Midlands MEPs Glenis Willmott and Emma McClarkin have visited Professor Walker's Children's Brain Tumour Research Centre. Glenis Willmott is a long term supporter and advocate for the pioneering work of the University's Children's Brain Tumour Research Centre. She is also the EU rapporteur charged with taking the Clinical Trials Regulation through the European Parliament and negotiating the final legislation with EU governments.

Glenis Willmott MEP said: "Because there are so few patients with certain types of cancer we need to be able to carry out cross border trials with other EU countries. That's why we have the Clinical Trials Directive, but at the moment it isn't working. EU countries are still using different standards which means researchers have to apply multiple times for a clinical trial, with different applications. Some countries might approve the trial, others might reject it. This makes the whole process time-consuming, expensive, and sometimes futile. That's why we want to make sure all are playing by the same rules. We also need to reduce unnecessary bureaucracy and delays in authorising this life-saving research, and reduce astronomical . I am steering all of these proposals through the European Parliament, and will negotiate the final law with EU governments.

"There is no known treatment to save a child with some types of brain tumour. We need new research to provide hope to these children and their families. We also need more expertise and awareness of childhood cancers, because the earlier the cancer is diagnosed, the higher the chances are that the child can survive. I am lucky to have the excellent Nottingham Children's Brain Tumour Research Centre in my constituency which is an example of the best way to care for children with cancer."

Emma McClarkin MEP has also visited the Children's Brain Tumour Research Centre in Nottingham and is using her influence in relevant European Parliament committees to push for amendments in forthcoming legislation. She said: "Removing EU administrative burdens will increase the number of clinical trials in the UK and throughout the EU so that we can continue our research to deliver more and better treatments. I am so proud of the work Professor Walker and his team do and we should listen to those who are carrying out these clinical trials to see what we can do to improve and help the process."

Revisions to the new Clinical Trials Directive are due to be voted on by the over the next few months and may become EU law by this autumn.

Explore further: Calls for policy changes as lives put at risk by bureaucracy

Related Stories

Calls for policy changes as lives put at risk by bureaucracy

February 15, 2012
A European Parliament event to discuss how EU legislation has negatively affected the treatment received by children and adolescents has marked International Childhood Cancer Day - 15th February.

Access to clinical trials drives dramatic increases in survival from childhood cancer

July 17, 2012
More children are surviving cancer in Britain than ever before according to new research published in the cancer journal Annals of Oncology [1] today (Wednesday). The improvement in survival has been driven by the increasing ...

Improvement in child cancer survival rates threatened by lack of new drug development

February 19, 2013
Remarkable improvements in survival from childhood cancer have taken place in high- income countries over the past 50 years, but further progress is being threatened by increasingly strict research regulations and insufficient ...

Teenage and young adult cancer deaths almost halved in last 30 years but success masks lack of access to clinical trials

March 25, 2013
The number of teenagers and young adults dying from cancer in Britain has fallen from around 580 per year in the mid-70s (1975-77) to around 300 today (2008-2010), according to a new Cancer Research UK report.

EU lawmakers reject mining of air passenger data (Update)

April 24, 2013
EU lawmakers on Wednesday rejected plans to allow European air passenger data to be used to fight against organised crime and terrorism, the European Parliament said.

Recommended for you

How cancer metastasis happens: Researchers reveal a key mechanism

January 18, 2018
Cancer metastasis, the migration of cells from a primary tumor to form distant tumors in the body, can be triggered by a chronic leakage of DNA within tumor cells, according to a team led by Weill Cornell Medicine and Memorial ...

Modular gene enhancer promotes leukemia and regulates effectiveness of chemotherapy

January 18, 2018
Every day, billions of new blood cells are generated in the bone marrow. The gene Myc is known to play an important role in this process, and is also known to play a role in cancer. Scientists from the German Cancer Research ...

These foods may up your odds for colon cancer

January 18, 2018
(HealthDay)—Chowing down on red meat, white bread and sugar-laden drinks might increase your long-term risk of colon cancer, a new study suggests.

The pill lowers ovarian cancer risk, even for smokers

January 18, 2018
(HealthDay)—It's known that use of the birth control pill is tied to lower odds for ovarian cancer, but new research shows the benefit extends to smokers or women who are obese.

Researchers develop swallowable test to detect pre-cancerous Barrett's esophagus

January 17, 2018
Investigators at Case Western Reserve University School of Medicine and University Hospitals Cleveland Medical Center have developed a simple, swallowable test for early detection of Barrett's esophagus that offers promise ...

Scientists zoom in to watch DNA code being read

January 17, 2018
Scientists have unveiled incredible images of how the DNA code is read and interpreted—revealing new detail about one of the fundamental processes of life.


Please sign in to add a comment. Registration is free, and takes less than a minute. Read more

Click here to reset your password.
Sign in to get notified via email when new comments are made.