EUROPEAN REFERENCE NETWORK ON RARE ADULT CANCERS... 2 Summary... 3 Work Package... 4

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1 Table Of Content EUROPEAN REFERENCE NETWORK ON RARE ADULT CANCERS... 2 Summary... 3 Work Package... 4 structure the ERN... 4 To promote EURACAN initiative... 4 To share and promote healthcare best practices... 4 To implement the funding/sustainability approach... 4 Coordinator, Leader contact and partners... 7 Outputs... 8 Education/Training/Exchange visits strategy plan... 8 Periodic report (including report on task forces activities)... 8 Clinical Practice guidelines... 8 EURACAN ELSI framework... 8 EURACAN database standards and catalogues (registries, biobanks, reference data)... 8 Communication and dissemination plan... 8 EURACAN Progress report (TTL, DG)... 8 Annual Board meeting... 8 Management Guide and signed Terms of Reference... 8 Operational secured intranet & Web-based platform... 8 Page 1/9

2 EUROPEAN REFERENCE NETWORK ON RARE ADULT CANCERS JA GPSD [705038] START DATE: 01/03/2017 END DATE: 28/02/2018 DURATION: 12 month(s) CURRENT STATUS: Finalised PROGRAMME TITLE: 3rd Health Programme ( ) PROGRAMME PRIORITY: - CALL: EUROPEAN REFERENCE NETWORKS SPECIFIC GRANT AGREEMENTS COVERING YEAR 2017 TOPIC: ERN Specific Grant Agreements Year 1 EC CONTRIBUTION: EUR KEYWORDS: Clinical Practice Guidelines, Cross Border Health Care, Innovation, Patient Pathways, Quality Of Life, Rare Adult Cancers, Research, Research, Survival Page 2/9

3 SUMMARY Project abstract Page 3/9

4 Work package Work Package 1: structure the ERN Start month: 1 End month: 12 Work Package Leader: 1.1 Setting up EURACAN strategic/operational governance (boards roles, signed ToR..): During the kick-off meeting, the rules of the project governance will be adopted, and the roles assigned (leaders designated by vote), the procedure for signing the Terms of Reference of the Network will be launched. The operational committees will be set up (composition, missions, first tasks defined, decision making rules, etc.) 1.2 Developing scorecards, quality procedures, piloting tools: EURACAN will develop and release the tools to properly operate and control EURACAN activities: pilot scorecards, questionnaires, surveys, web-based platform (including the secured area). This will be implemented by the Quality Control TTF, supported by the actions/tools already in place thanks to the JARC. 1.3 Performing EURACAN strategic/operational governance: The work plan of the operational committees, domain groups, task forces will be set up and implemented along the first year (schedule of the meetings, actions. The reporting process to monitor the governance and progress of the Network will be set up and implemented (first report at M6). Work Package 2: To promote EURACAN initiative Start month: 1 End month: 12 Work Package Leader: 2.1 Elaborate communication/dissemination strategy: A communication plan / strategy will be developed by M12, which will detail all upcoming communication actions, means, tools which will be developped by year 2 and onwards (flyers, press releases, etc. ) if not started before. The communication/dissemination plan development will be lead by the TTF on comm/diss, and will cover all domains. Target groups and dedicated actions will be identified for each domain. 2.2 Developping and updating web-based communication platform: The will develop and provide a web-based communication platform linked to the websote, including a secured area, to secure the internal communication between all members and associate partners, to ensure an operational functioning of the Network. This will be done in close contact with the other ERN to share tools as much as possible. 2.3 Developping communication/dissemination tools: This first year will concentrate on the development of the EURACAN website and communication platform, essential tools to (1) the wide dissemination of information on the Network and on its planned actions to a wide audience, and (2) Page 4/9

5 to secure the internal communication between all members and associate partners, to ensure an operational functioning of the Network. Work Package 3: To share and promote healthcare best practices Start month: 1 End month: 12 Work Package Leader: 3.1 Reviewing EURACAN national laws/regulations/procedures framework: The Quality TTF together with national representatives from each of the participating countries will be consolidating and reviewing the national regulations with potential impact on the activities of EURACAN. A summary report of this wrk will be submitted by M12. Please complete 3.2 Developing first set of harmonised CPGs: This work has already been initiated with the ESMO group, an academic group partner of EURACAN and will be pursued with other partner stakeholders. The strategy will be to work on an update of the exisiting ESMO guidelines of the different domains and to fill the gaps for those tumors not covered in the previous versions. Most EURACAN participants were actually involved in these guidelines in the past. EURACAN provides the opportunity to prepare an updated and exhaustive set on guidelines for the rare cancers. This task is scheduled for For specific tumor types (eg chordoma) or domains (eg, specific guidelines have sometimes been developped at a national or international level. The consistency of the different corpus of available guidelines with be assessed by the domain leaders and the Guidelines Task Force to provide a unified and consensus guideline corpus from the EURACAN ERN.Please complete. Activities: review of existing guidelines per domain, selection, harmonisation, edition of ERN-EURACAN CPGs, translation in 10 MS languages, official information to professionals firstly via ESMO and EURACAN websites 3.3 Referencing EURACAN databases, resources, registries..: A review of the existing health authorities approved databases and registries active in the different countries will be performed by each domain. Several of these databases are already multinational (eg conticabase, conticagist, conticabone). For all domains, the collection of exisiting databases will be performed during the first 6 months. An analysis of the oppotunities to expand these databases across countries(both on legal and logistic aspects will also be conducted by the domain leaders). Please complete 3.4 Defining and implementing Training, education/exchanges strategy and plan (see for details Network application form - Appendix B measure 8.1.1): The strategy plan for development of teaching and training will be generated by the middle of year one, together with our partners and patients, ESMO, ESO, ECCO, ESSO and other relevant stakeholders. The precise content of the courses and MOOC and other training action will be defined discussed and validated in the scope of the TTF on Training/Education based on a review of the needs per domain. Page 5/9

6 Work Package 4: To implement the funding/sustainability approach Start month: 1 End month: 12 Work Package Leader: 4.1 Develop strategy and tools to support the sustainability of the Network: Define the funding/sustainability strategy including the creation of a dedicated legal entity, develop strategic intelligence tools to scout the funding opportunities (relevant for EURACAN: e.g. funding of transversal task force effort) in a timeefficient manner. This will be implemented by the Transversal Task Force on Funding/sustainability plan. Page 6/9

7 COORDINATOR, LEADER CONTACT AND PARTNERS COORDINATOR CENTRE ANTICANCEREUX LEON BERARD () RUE LAENNEC LYON France WEBSITE: Project leader contact Name: BLAY Jean-Yves Phone: PARTNERS No partners related to the current project Page 7/9

8 OUTPUTS Education/Training/Exchange visits strategy plan Report on planning and strategy of training activities in Euracan Periodic report (including report on task forces activities) EURACAN activity, evaluation and financial report Clinical Practice guidelines Harmonised Clinical Practice Guidelines publication (EURACAN website/esmo website) covering EURACAN domains EURACAN ELSI framework Exhaustive list of national laws or procedures with relevance to EURACAN EURACAN database standards and catalogues (registries, biobanks, reference data) Review available on website Communication and dissemination plan Page 8/9

9 Powered by TCPDF ( report on communication strategy and started actions EURACAN Progress report (TTL, DG) first annual meeting involving all partners - Minutes of board meeting Annual Board meeting Minutes of advisory board meeting Management Guide and signed Terms of Reference Published on: 12/06/2018 Report formalising roles members, associated, boards; responsibilities; management procedures and contacts Operational secured intranet & Web-based platform Published on: 12/06/2018 Secured area of EURACAN to organise the exchange of information and best practices among EURACAN members Page 9/9