The 4th ICCCPO Meeting of European member was held in Basel (Switzerland) from 24th – 26th of May 2013. More than 50 parents and survivors from 18 different countries took part in this meeting about relevant issues concerning childhood cancer within Europe.
On the first day, the meeting venue was at the modern and newly built children`s hospital in Basel. After a warm welcome from Prof. Dr. med Nicolas von der Weid (head of Hematology-Oncology, UKBB hospital Basel), Birgitta Setz, Peter Lack and Anita Kienesberger the whole group started a “guided tour” through the University Children`s Hospital of Basel (UKBB) where the family-friendly concept was explained by the director of the hospital.
During this two days meeting many topics were addressed, which ranged from survivors issues, long-term follow-up, clinical trials and the future goals of paediatric oncology in Europe. We were very happy that a lot of presenters followed the invitation by ICCCPO to meet and update parents and survivors representatives.
Survivorship issues belonged to the agenda: Jaap den Hartogh presented the outcome of the collaboration between physicians, survivors and parent group and how all together can work on the improvement of long-term care for the survivors community. Milos and Vladimir Radulovic gave an impressive insight into the “Radio MladiCe” project, which is an internet radio of and for survivors. Morvan Dupont from “Les Aguerris“, the newly founded survivors group from France, presented the aims of the group and how survivors can be an active voice within the community.
On Saturday and Sunday the meeting venue was in the centre of Basel in a traditional and impressive room of the so called “Zunfthaus”. Gilles Vassal, SIOP Europe president, talked about the current situation of paediatric oncology and the importance of long-term sustainability (what will be after the EU funded project ENCCA). There was a vivid discussion and the common agreement that SIOP Europe and ICCCPO has to strengthen their capacity by working together for the best care and research with less late-effects for children with cancer in all European countries.
Additionally in the focus of attention was the update of the different EU funded projects in which ICCCPO is an active partner: ENCCA, PanCareSurFup, EPOC and IntReALL. The progress of the so called Survivorship Passport, the harmonization of long-term follow-up guidelines within Europe, the involvement of ICCCPO in the design to approve certain medications in paediatric oncology protocols (e.g. doxorubicin) and the need of public awareness about the importance of long-term follow-up of childhood cancer survivors to improve their quality of life was addressed (read more about ICCCPOs involvement in EU funded projects).
Within the ENCCA project parents and survivors are asked to participate in ethical issues in the design of clinical trials. For the first time an educational workshop was held, with presentations from Frédéric Arnold, Marianne Naafs-Wilstra and Lejla Kameric about the key questions parents have to ask before consenting to enter their child in a clinical trial, about the role of a parent organisation in medical research and about the situation in the Balkan region (what do parents know about clinical trials?). Additionally Ruth Ladenstein, ENCCA coordinator, gave an update of the current draft proposal of the EU clinical trial regulation and proposal of a two-steps informed consent procedure. The French Philosopher Jean Claude Dupont prepared a questionnaire for the parents with the title “Nothing about you, without you: Your inputs in ENCCA guidelines on clinical trials”.
At the last ICCCPO Meeting in Luxembourg 2012 the Parent and Patient Advocacy Committee (PPAC) was founded, which is one of the milestones for ICCCPO within the ENCCA project. The PPAC members presented their work they did so far. This committee is composed of parents as well as survivors and will meet regularly as well as on demand (read more PPAC).
A very nice get together was prepared for Saturday evening: The local hosts organised a boat trip on the Rhine river. A big thank-you goes to Peter Lack, Birgitta Setz, Catia Gehrig and Daniela Dommen, from „Stiftung für krebskranke Kinder, Regio Basiliensis” and „Kinderkrebshilfe Schweiz” who hosted the meeting and who had perfectly prepared everything for and during this meeting. Unfortunately, this time the Weather-God was not on our side, but if the Swiss locals could have influenced it, they would have arranged this too!