EU-funded researchers are improving collaboration among cancer specialists working with children, bringing together doctors, nurses, patient and parent organisations, drug manufacturers and legislators to get better treatment more quickly to children and other young people suffering from the disease.

Cancer affects around one in 500 people in Europe during childhood and adolescence, and remains the leading cause of death from disease beyond infancy. Cancer researchers have made great strides in treating the disease – but more can be done to help those affected.

One way is by bringing together researchers across Europe to share knowledge and best practices rather than duplicating efforts by individual research teams. The EU-funded ENCCA project is working to create sustainable collaboration among those working in paediatric oncology in Europe.

Among the results will be better access to existing biological samples and other resources, support for survivors of childhood cancer, more efficient rules for EU clinical trials, and ultimately better treatments for children with cancer.

ENCCA has already succeeded in developing a broad network of paediatric oncologists and research centres that interact on a regular basis with ethical and legal experts.

The ENCCA network is composed by 34 partners spanning 11 European countries and includes 27 eminent paediatric oncology institutions. ENCCA partners are now actively collaborating with several other EU and non-EU projects and organisations, in order to coordinate efforts towards the improvement of paediatric cancer research and cure.

“Each year, 35 000 new cases of cancer in young people are registered in Europe,” says ENCCA project coordinator Ruth Ladenstein of the Children’s Cancer Research Institute in Vienna. “Thanks to the new treatments developed through national and international clinical trials in Europe the survival rate has improved in recent decades, now up to between 81% to 87%.”

On the other hand, survival rates are disproportionate across Europe, and in the various EU countries, different legislation, languages and cultural practices continue to hamper the implementation of comprehensive clinical trials.

“The current EU clinical trials directive really limits the possibility of doing trials in paediatric oncology,” says Ladenstein, “particularly in terms of the added bureaucratic burden.” The situation needs to be improved, she says, in order to make the evaluation of new drugs or treatments in paediatric cancer more efficient.

Therefore, ENCCA is working to improve EU rules regulating clinical trials, and to develop better procedures for informed consent. Working closely at the EU level with the European Society of Paediatric Oncology (SIOPE), ENCCA is developing simplified procedures that could be implemented under the current EU clinical trials regulation.

SIOPE was one of the key stakeholders in the discussion on the clinical trials regulation, thus making sure that priorities for childhood and adolescent oncology are correctly represented.

ENCCA’s work to create a networking among paediatric oncologists and research centres allows participants to interact on a regular basis with ethical and legal experts.

“We want to facilitate patients’ access to paediatric clinical trials by providing guidelines, disseminating knowledge, creating interactions with other research groups,” Ladenstein says.

“Our approach is to work to improve communication channels, by bringing together all relevant stakeholders, their expertise and viewpoints, to ensure that the project is all-encompassing while remaining patient-centred.”

In particular, she says, existing tumour specialist groups have been incorporated into a 'European Clinical Research Council for Paediatric Oncology' (ECRC) that facilitates information exchange, promotes best practices and makes it easier for them to access the equipment and tools they need for their research.

Industry and legislators as key partners

The ENCCA network has also started approaching the industry to promote its involvement in the development of new drugs. The involvement of industry in paediatric oncology has always been difficult because the market is limited and is unlikely to provide enough revenues to offset the cost of developing new drugs, she adds. However, new drugs are essential; alternative ways to test and to develop them for paediatric cancer indications must be identified, she says.

ENCCA is also working to improve EU rules regulating clinical trials, and to develop better procedures for informed consent. Working closely at the EU level with the European Society of Paediatric Oncology, ENCCA is developing simplified procedures that could be implemented under the current EU clinical trials regulation.

All the while, cancer research and treatment remain central to ENCCA’s work. Groups within the project are working on the development of new drugs, on the promotion of cancer registries and on providing access to clinical data and biological samples stored in various places in the EU.

ENCCA is working to harmonise and advance therapeutic strategies, aiming for improved levels of standards of care. Training in these areas is being made available for medical doctors, nurses and parents.

The project team is also organising activities to help teenagers and young adults with cancer during the treatment phase and to support long term follow up survivors. Moreover, ENCCA is working to raise awareness within the community about teenagers and young adults’ specific needs and priorities.

To tackle problems related to follow-up effects in survivors, ENCCA has developed a system to record and retrieve all previous medical treatments and information about side effects.

Together with the EU-funded PANCARESURFUP project, ENCCA is also creating a platform linking EU medical databases, including so-called bio-banks, where large numbers of tissue samples that can be of great value to researchers are classified and stored following data protection rules.

Ladenstein says hundreds of researchers could eventually benefit from using the ENCCA portal, while thousands of paediatric cancer patients and survivors would be the ultimate beneficiaries.

4th February 2014 - World Cancer Day