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Paediatric Cancer European Reference Network Y3-5 [ERN-PAEDCAN-Y3-5] [847032] - Operating Grant
Coordination of the action by lead CCRI

Start month:1 - End month: 36

Task 1.1 Day-to-day management and implementation of the ERN-PAEDCAN activities.

Task 1.2 Facilitate and support the communication among ERN members.

Task 1.3 Support the dissemination and evaluatio...
Task 1.1 Day-to-day management and implementation of the ERN-PAEDCAN activities.

Task 1.2 Facilitate and support the communication among ERN members.

Task 1.3 Support the dissemination and evaluation activities.

Task 1.4 Preparation and submission of technical and financial reports.
Dissemination by lead CCRI

Start month:1 - End month: 36

Task 2.1 ERN PaedCan will disseminate access points through the RoadMap for HCPs looking for advice and highly skilled treatment interventions making Guidance within the RoadMap easily accessible via ...
Task 2.1 ERN PaedCan will disseminate access points through the RoadMap for HCPs looking for advice and highly skilled treatment interventions making Guidance within the RoadMap easily accessible via relevant WEB pages (SIOPE/European Commission).

Task 2.2 ERN PaedCan will disseminate the potential of the CPMS and foster structured advice by reaching out to HCP in Europe creating awareness of this option in close collaboration with clinical trial groups.

Task 2.3 These activities will receive strong support through SIOPE by distributing these activities in addition actively to its members and capitalising also on the CRC community and its potential to inform national paediatric national societies and tumour groups.

Task 2.4 With the active support of SIOPE, Coordinator’s team will create/update the dissemination plan of activities for years 3 to 5 to make sure information may reach a maximum of interest groups within the communities.

Task 2.5 Two GA meetings per year, including all relevant stakeholders (ERN-PAEDCAN members, PO experts, patient and parents’ organisations, policy-makers) will be used to foster dissemination about the new opportunities to improve patients´ pathways across Europe as needed and relevant.

Task 2.6 Stakeholder meetings and meetings with other ERNs, meetings of adult cancer groups and parents'/patients' survivor organisations will further help to inform the wider communities. His also includes creation of dissemination materials (e.g. brochures, banners, etc.) and promotion of ERN-PAEDCAN in external meetings.
Evaluation of the action implementation by lead CCRI

Start month:1 - End month: 36

Task 3.1 Implementation of the Quality Assurance Plan (QAP).

Task 3.2 Outline the quality control, quality assurance and present the various roles and responsibilities of the team in managing the pro...
Task 3.1 Implementation of the Quality Assurance Plan (QAP).

Task 3.2 Outline the quality control, quality assurance and present the various roles and responsibilities of the team in managing the project´s quality processes.

Task 3.3 Assess and evaluate the impact and quality of the activities proposed under ERN-PAEDCAN through a mid-term and a final evaluation report.
Roadmap development by lead CCRI

Start month:1 - End month: 36

Task 4.1 Assess the status of the roadmaps initiated in years 1 and 2 of ERN-PAEDCAN.

Task 4.2 Identify the interested trial groups to embark in the bottom up process to outline their standards of ca...
Task 4.1 Assess the status of the roadmaps initiated in years 1 and 2 of ERN-PAEDCAN.

Task 4.2 Identify the interested trial groups to embark in the bottom up process to outline their standards of care and to identify the respective highly skilled interventions likely to require CBHC settings within their respective clinical trial group.

Task 4.3 As a next step identification of respective HoCs by the CTG engaged with treatment across Europe. HoCs need to provide advisory boards/tumour boards and need to be willing to engage in advisory function and be ready to receive CBHC patients.

Task 4.4 Initiate at least 3 tumour entity sub-network for the ERN PaedCan roadmap.
Tumour Board development by lead CCRI

Start month:1 - End month: 36

Task 5.1 Continue to identify centres that have a VTB in place and CBHC established that are willing to implement the CPMS.

Task 5.2 Progress report on pitfalls and user friendliness of the CPMS.
Twinning and e-Training Programmes by lead CCRI

Start month:1 - End month: 36

Task 6.1 Identification of LHEAR country-twinning partners and their needs.

Task 6.2 Identification of individuals willing to participate in educational programmes and educational programmes and oppo...
Task 6.1 Identification of LHEAR country-twinning partners and their needs.

Task 6.2 Identification of individuals willing to participate in educational programmes and educational programmes and opportunities are identified.

Task 6.3 Establish a memorandum of understanding with twinning partner centres.

Task 6.4 Identify the needs of the community and particularly the rare tumour community that would most benefit from the development of the e-learning tools.

Task 6.5 Develop and produce a movie per year on a specific tumour entity.

Task 6.6 Liaise with different stakeholders to produce a webinar on a prior identified topic and tumour entity.
Best practice sharing by lead CCRI

Start month:1 - End month: 36

Task 7.1 Organise a best practice meeting per year on a tumour entity that is represented in the roadmap development.

Task 7.2 Liaison with representatives of the CRC, chairs of the NAPHOS, other exp...
Task 7.1 Organise a best practice meeting per year on a tumour entity that is represented in the roadmap development.

Task 7.2 Liaison with representatives of the CRC, chairs of the NAPHOS, other experts and representatives of parents/patients' organisation.

Task 7.3 Establishment of best practice guidelines.
Survivorship Passport (SURPASS) by lead CCRI

Start month:1 - End month: 36

Task 8.1 Continuous support to the paediatric oncology community, parents, patients and survivors to implement the SURPASS across Europe.

Task 8.2 Setting up a stakeholder meeting per year of the SU...
Task 8.1 Continuous support to the paediatric oncology community, parents, patients and survivors to implement the SURPASS across Europe.

Task 8.2 Setting up a stakeholder meeting per year of the SURPASS community to support the implementation of the SURPASS on the national level.
Details
Start date: 01/03/2019
End date: 28/02/2022
Duration: 36 month(s)
Current status: Finalised
Programme title: 3rd Health Programme (2014-2020)
EC Contribution: € 600 000,00