Work Packages

 

Project partners are working to complete PARTNER deliverables and milestones through 7 Work Packages:

WP1 – Coordination of the project

• WP leader: AOPD
• Description: Actions undertaken to manage the project and to make sure that it is implemented as planned.
• Deliverables: Interim, technical progress and financial progress reports.

WP2 – Dissemination of the project

• WP leader: CCRI
• Description: Actions undertaken to ensure that the results and deliverables of the project will be made available to the target groups.
• Deliverables:
  • D2.1 – Dissemination&Communication plan
  • D2.2 – Leaflet
  • D2.3 – Project website
  • D2.4 – Layman version of the final report

WP3 – Evaluation of the project

• WP leader: CCRI
• Description: Actions undertaken to verify if the project is being implemented as planned and reaches the objectives
• Deliverables:
  • D3.1 – Quality Assurance Plan (QUAP)
  • D3.2 – Preparation of the Interim Report
  • D3.3 – Preparation of the final Evaluation Report

WP4 – Analysis and harmonization of data acquisition of the existing national VRT registries

• WP leader: EKUT
• Description: Actions undertaken to harmonize the national VRT registries
• Deliverables:
  • D4.1 – Gathering of VRT entities and variables of national registries and preparation of consensus core data sheet for with entities and variables for European data base
  • D4.2 – Report and recommendations on harmonized procedures of primary source data verification, registration and documentation
  • D4.3 – List of variables that will be selected to link the PARTNER to the virtual consultation system

WP5 – Creation of a European registry for paediatric patients with very rare tumours

• WP leader: AOPD
• Description: Actions undertaken to create a European registry for paediatric patients with very rare tumours
• Deliverables:
  • D5.1 – Report on the operative status of the registry structure.

WP6 – Standard of care recommendations for children with VRT

• WP leader: CURIE
• Description: Actions undertaken to establish a Working Group, to create a VRT list and to elaborate a standard of cares documents
• Deliverables:
  • D6.1 – List of VRT that need standard of care elaboration
  • D6.2 – Development of standard of care recommendations for paediatric very rare tumours.

WP7 – Integration of LHEAR countries in a EU platform dedicated to VRT in paediatric age

• WP leader: GUMed
• Description: Actions undertaken to integrate LHEAR countries in a EU platform dedicated to VRT in paediatric age
• Deliverables:
  • D7.1 – Report describing the results of the EU survey
  • D7.2 – Creation of a manual (in English and local language) to access the virtual consultation system and the PARTNER VRT platform.