ExPO-r-Net & invited ECRC members Meeting in Toronto
The last ExPO-r-Net Meeting took place on Friday 24th October 2014 during the SIOP Congress in Toronto, Canada. Several project partners and ECRC invited experts attended this important gathering, where they could discuss the project current status, the new tasks and important interactions with the ECRC (European Clinical Research Council in paediatric oncology) – such as the definition of patients’ needs, the criteria for the definition of tumour boards and the quality criteria for ERNs – the Survivorship Passport and the Rare Tumours Network.
Biannual ExPO-r-Net Meeting in Valencia
The ExPO-r-Net Biannual ExeCom Meeting took place at the Instituto de Investigacion Sanitaria La Fe, Valencia (Spain) on 2-3 October 2014. Successful discussions took place on this occasion, where WP leaders had the opportunity to present the actions and deliverables achieved so far. A questionnaire will be circulated to the Chairs of the different European clinical trial groups, in order to identify the sub-groups of young cancer patients whose diagnostic and/or treatment pathway includes skills and services that may not be widely available in all centres or all EU Member States.
1st ERN Meeting on 23rd June 2014
A Conference on European Reference Networks (ERNs) took place last 23rd June 2014 in Brussels. The conference aimed to discuss the organisation of specialised networks across the EU and examine the next steps of the deployment process, in preparation of the forthcoming call for European Reference Networks. The pilot project ExPO-r-Net, focusing on centres of expertise in paediatric cancers, represents our significant contribution to this European objective.
The Survivorship Passport: an innovative solution for follow-up
An outstanding achievement of two existing FP7 projects – ENCCA and PanCareSurFup – is the partnership between professionals, survivors and IT experts to create a “Survivorship Passport”. Now included in the scope of ExPO-r-Net, the passport aims to provide vital data on previous treatment and recommendations on follow-up for late effects for each patient. The first step has been to generate the list of variables that are important for survivors, such as tumour type, risk factors, treatment exposure and so on, which was settled via a Europe-wide ballot. The second step is to evaluate the complexity of completing the Passport and finetuning other aspects.
Standards of Care for Children with Cancer, available in 16 languages
The dissemination of the European Standards of Care for Children with Cancer is making fast progresses. Already translated in 16 languages (English, Czech, German, Greek, Italian, Latvian, Lithuanian, Polish, Portuguese, Romanian, Serbian, Slovak, Slovenian, Spanish, Russian and Ukrainian), this important document is today easily accessible in most European hospitals, clinics, health centres and families in Europe.
ExPO-r-Net Kick Off Meeting in Luxembourg
Officially starting its activities with a kick-off meeting last 21 March 2014 in Luxembourg ExPO-r-Net – the European Expert Paediatric Oncology Reference Network for Diagnostics and Treatment (2014-2017) – involves a consortium of 18 Associated and 42 Collaborating Partners from our community.
This new EU project will establish strong links between pre-existing reference centres of excellence, seeking mechanisms to facilitate movement of information and knowledge rather than patients (through ICT tools and e-Health), aiming to achieve a better access to high-quality healthcare for children whose conditions require specialised expertise in a Member State other than the Member State of affiliation (where this is not available due to low case volumes and lack of local resources).
‘Inspired’ by the SIOPE-led ‘Standards of Care for Children with Cancer’, this project will strive to concretely implement them in the framework of a new ‘European Reference Network’ (ERN), namely a pilot network of cooperation among paediatric oncology centres. This ERN will provide a clear roadmap to approved expert referral sites and tumour advisory boards for healthcare providers, improving thereby the quality of the healthcare provided to childhood cancer patients on our continent. Expert referral centres that will be allowed to enter the ExPO-r-Net network will benefit from improved experience, knowledge and capacity, and the project will also foster e-Health solutions based on interoperability and standardisation for better exchange of information. The creation of ERNs implements the ‘Cross-Border Directive’, which entered into force last October 2013 and aims to improve access to highly specialised healthcare for patients suffering of diseases which i) have a low prevalence, ii) are complex and cost intensive and iii) require a particular concentration of expertise, as it is the case for childhood and adolescent cancers.
ExPO-r-Net follows an organizational model based on multidisciplinarity and cooperation, both among the members of the network and with external providers. Several partners from the SIOPE community took part in the kick-off event of ExPO-r-Net, and this new project will be also represented within the ECRC (European Clinical Research Council in paediatric and adolescent oncology), integrating thereby pre-existing major paediatric haemato-oncology study groups and European national paediatric oncology societies. ExPO-r-Net will also establish close synergies with PanCare and the ENCCA PPAC (Parent/Patient Advocacy Committee) and EAC (Ethical Advisory Committee). Finally the activities of ExPO-r-Net will be based on the work already carried out by other similar projects.
This is just the start of a new ‘European adventure’: once fully operational, ExPO-r-Net will be opening the path to better treatment and care for childhood cancer patients, no matter where they live in Europe.