“I hope that we can raise the survival rates in pediatric oncology patients up to 90% within the next five years,” introduced the present SIOP-Europe president, Prof. Ruth Ladenstein (Vienna), ENCCA – one of the most ambitious EU-wide projects in pediatric oncology.
About 45 participants – parents as well as survivors – had come this second EU-wide meeting of ICCCPO member groups in Bonn (Germany) by the end of May 2011. Luckily, this time the flights were not hampered by any volcano ash cloud (though another Icelandic volcano erupted right at the end of the meeting weekend!).
As Prof. Ladenstein explained, ENCCA (European Network of Cancer Research in Children and Adolescents) aims to structure and harmonize clinical trials throughout Europe in order to improve treatment and care as well as access to best treatment in paediatric oncology all over Europe. Harmonizing research in paediatric oncology also means better and easier research in a field that might be considered an orphan disease as there are numerous different types of cancer in childhood – some of them very rare – but all need very specific treatment. One of the goals is to create a virtual European Institute for cancer research in children and adolescents which does clinical as well as translational studies. This in turn will improve the standards of care throughout Europe as postulated by the “European Standards of Care for Children with Cancer“.
ICCCPO is involved in several “workpackages” of the ENCCA-project, such as “European sustainable strategy for clinical trials in peadiatric oncology”, “Ethical aspects of clinical trails”, “Education and training” as well as “Dissemination activities” and – last but not least – in “Quality of survivorship”. Parents and survivors are asked to participate on various levels. One important issue within the “Quality of survivorship” is to design a so called “Suvivors’ Passport” – a personalized record of each survivor’s medical history. Most likely it will be digital device that stores the essential information about the disease, the treatment and its possible late effects. This tool will make survivors more independent from their “home-clinic” after having finished regular check-ups and when entering adult life when other medical specialties, such as internists, cardiologists, gynecologists etc would be the logical choice for further follow-up. This “Pass” will certainly empower the survivors in making their own choices and being much more responsible for their own benefits. The attendants of the meeting and specifically the survivors welcomed the idea and discussed the pro’s and con’s of such a device extensively; a planned Europe-wide survey will ask for further input.
Parents and survivors are asked to participate in ethical issues around the design of clinical trials. Different aspects have been discussed with the French Philosopher Jean Claude Dupont whose aim it is to integrate ethical aspects of parents and patients into the treatment information which is the basis for the confirmed consent to treatment. See also the report: “Clinical Trials – a Mother’s perspective.”
ICCCPO is engaged in projects designed to approve certain medications used in paediatric oncology protocols though not approved for children. One of these projects is EPOC (European Paediatric Oncology off-patent medicines Consortium), which investigates the pharmacokinetics of the drug doxorubicin – a widely used and very efficient drug in paediatric oncology- however not yet tested specifically for different age groups in childhood. Read more: Safer Medicine for Children.
More about other topics of the conference, such as centralization / concentration of care and research will follow soon.