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Childhood cancer research needs urgent boost, study shows [Print to PDF] [Print to RTF]

Funding for childhood cancer research is too low and too dependent on short-term grants to maintain the improvements in survival rates seen in recent decades. This is the stark warning issued by EU-funded researchers who also highlight the steps needed to improve the way clini...
Childhood cancer research needs urgent boost, study shows
Funding for childhood cancer research is too low and too dependent on short-term grants to maintain the improvements in survival rates seen in recent decades. This is the stark warning issued by EU-funded researchers who also highlight the steps needed to improve the way clinical trials for childhood cancer drugs are organised in Europe.

EU support for the work came from the EUROCANCERCOMS ('Establishing an efficient network for cancer communication in Europe') project, which has been allocated EUR 1.25 million under the 'Science in society' budget line of the Seventh Framework Programme (FP7).

The study is published in the journal Ecancer and the findings were also presented at an event at the European Parliament in Brussels, Belgium on 9 February to mark International Childhood Cancer Awareness Day.

The researchers note that paediatric oncology is 'a vibrant and growing research community which has delivered major advances across many childhood cancers in terms of survival and quality-of-life outcomes'. Today, 80% of childhood cancer patients can expect to survive the disease thanks to massive improvements in diagnosis and treatment over the last 4 decades.

However, childhood cancer research is not getting the attention it deserves; the researchers say paediatric oncology papers received are cited less often than other papers in the journals in which they are published.

The team also looked into collaboration between countries and regions. As expected, there is close collaboration between researchers in Canada and the US, and researchers in the EU are increasingly working together. However, there is relatively little collaboration between North America and Europe, and this should be addressed, the researchers say. They also call for greater research cooperation between developed and transitional countries. Within Europe, countries in eastern Europe, where the incidence of cancer is high, rarely collaborate with colleagues in countries with a stronger research infrastructure, and this affects the care they can give to young patients.

A large part of the study is devoted to detailed analyses of the situation in 10 countries. 'Paediatric oncologists from 10 countries were asked about their national situations and the differences were striking,' said Professor Kathy Pritchard-Jones, Cancer Programme Director at the University College London Institute of Child Health in the UK. 'For example, a respondent from Bosnia-Herzegovina cited lack of hospital space, no specialist paediatric oncology radiologists, and inadequate diagnostic facilities, with everything adapted to adult patients. The Czech Republic said research grants were usually for only three years and there was little support for young scientists to attend international courses and congresses which could help harmonise the level of knowledge across European states.'

Elsewhere in Europe, Italian doctors expressed their concern over the fragmentation of childhood cancer care, while Swedish participants lamented the lack of experienced staff and difficulties finding funding for their countries paediatric oncology units. In the UK, worries focused on the impact on children's cancer care of cuts in the health service budget, among other things.

The report reveals that the European Commission is playing an increasing role in funding childhood cancer research. 'The enhanced support of paediatric oncology research by the EU is a positive step forward, however, the perception is that this still remains inadequate for the scale of the problem,' the researchers write. 'Furthermore, at national level funding is either too low or too fragile with significant activity reliant on short-term "soft" funding. National level funding needs to be more sustainable and coherent.'

The private sector could also do more. The authors state: 'There is a strong case for a private global fund for paediatric oncology to be established, that could support transnational collaborative research efforts that are necessary in these rare diseases.'

In their recommendations, the researchers call for sufficient EU funding to support a Europe-wide clinical trials network, and a reduction in the bureaucracy that slows the initiation and establishment of clinical trials. The team also highlights the importance of monitoring treatment outcomes and calls for the creation of a European Childhood Cancer Epidemiological Registry.

'With these tools we can maintain the enormous progress that has been made in the past,' emphasises Professor Pritchard-Jones. 'Without them, we run the risk of jeopardising that progress and failing children who are dependent on us for their survival.'

The team also writes: 'There needs to be a better understanding by regulatory policymakers of the level of risk for children with cancer participating in clinical trials (currently overestimated by insurers as well). It is essential that the EU Clinical Trials Directive (CTD) is modified if investigator-driven clinical trials are to have any future.'

Patient information is another area where improvement is needed. 'When a child is sick, the provision of accurate information to the patient and family is essential,' said Professor Richard Sullivan of the Centre for Global OncoPolicy in the UK. 'We believe that the establishment of a European Common Information Portal could do much to tackle major deficiencies in information in countries with few or no patient organisations, or where the existence of a large number of languages makes access to such information difficult.'
Source: ECCO - The European Cancer Organisation; Ecancer

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Record Number: 33051 / Last updated on: 2011-02-09
Category: Report summary
Provider: EC