Clinical trials for young oncological patients: a call for action at the European level.

Cancer is a rare disease in children, defined as having a prevalence of less than 50 in 100,000 or an incidence of less than 5 in 100,000 populations per year. Paediatric malignancies account for 1 % of all cancers in humans, and in Europe, 15,000 children are diagnosed with cancer every year. Olivia, 15 yo, survivor of Wilms tumor , reported her experience as a participant in a clinical trial at the International Childhood Cancer Awareness Day, which was held at the European Parliament of February 9, 2011. The event was hosted by MEP Mr Alojz Peterle and organized by the European Parliament in collaboration with the European Society for Paediatric Oncology.

EU Parliament
Olivia’s prognosis was very severe, and she owes her life to the participation in a clinical trial. As paediatric tumors are by definition a rare disease, clinical trials in children require multinational collaboration, which needs to be coordinated at the European level. This is why childhood cancer needs the spotlight and political support, of which the International Childhood Cancer Awareness Day was only a first step. Three were the key take-home messages delivered by Richard Sullivan, Kings Health Partner Integrated Cancer Centre concluding the event:
1) research in paediatric oncology is essential and is required to be strictly intertwined with clinical practice to achieve good outcomes in diagnosis and treatment;
2) research funding is fragile and short time, and needs support at both national and supranational level;
3) in some members state the level of support for young oncological patients is really poor. In the framework of the European Union, this issue becomes a transnational one.
In particular, information on childhood cancers varies considerably across Europe, and access to information influences heavily the access to care, early diagnosis and eventual the outcome of the disease. A poor information can lead to a late diagnosis, which in turn may result to be fatal, as some videos produced by “Jimmyteens TV” show.
Report on New Policies for Childhood Cancer
In order to avoid avoidable tragedies, it is necessary to establish a European common Information Portal aimed at promoting harmonization, enhanced control of information quality, standards of provision and linguistic access for countries with no patient organizations and/or native language information provision. From a broader perspective, there is an urgent need to think innovative in terms of funding for research and treatment in paediatric oncology, as regulation needs to line up and ensure that multinational trial start at the level of the European union. If you are interested in reading more about innovative policies in paediatric oncology in Europe, take a look at the report “‘The State of Research into Children with Cancer across Europe – New Policies for a New Decade”, produced by SIOPE in collaboration with Ecancercoms, a EU-funded project looking at the issues surrounding communication and dissemination of cancer information across Europe.

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