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ERN-PAEDCAN Partner: Paediatric Rare Tumours Network - European Registry [PARTNER] [777336] - Project
Layman
Layman version of the final report. lead by CCRI - [D.7]
Type: Document, reports...
Numbered in the proposal as (MD.5).This is a short (e.g. 10 pages) version of the final report, written for the interested public as a target group.
Layman version of the final report. lead by CCRI - [D.4]
Type: Document, reports...
Published on: 01/03/2022

Numbered in the proposal as (MD.5).This is a short (e.g. 10 pages) version of the final report, written for the interested public as a target group.
Interim report(s). lead by AOPD - [D.1]
Type: Document, reports...
Numbered in the proposal as (MD.1). This report describes the activities carried out, milestones and results achieved in the first half of the project.
Deliverables can be attached as annexes.
Final report. lead by AOPD - [D.2]
Type: Document, reports...
Numbered in the proposal as (MD.2). This report describes the project implementation and the results achieved.
The deliverables are annexed.
Project website launched. lead by CCRI - [D.5]
Type: Websites, patent filling, videos etc
Numbered in the proposal as (MD.5). Each project must have a dedicated web-site / web-pages. This can have a public part and another one accessible only to the applicants.
Full integration of PARTNER in the SIOPE communication plan and tools. lead by CCRI - [D.6]
Type: Other
In order to achieve maximum reach, full integration of PARTN-ER in the SIOPE communication plan and tools is expected.
Quality Assurance Plan (QUAP) is completed. lead by CCRI - [D.8]
Type: Document, reports...
Quality Assurance Plan (QUAP) is completed.
Preparation of the Interim Report. lead by CCRI - [D.9]
Type: Document, reports...
Preparation of the Interim Report.
Preparation of the final Evaluation Report. lead by CCRI - [D.10]
Type: Document, reports...
Preparation of the final Evaluation Report.
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. lead by EKUT - [D.11]
Type: Other
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.
Report and recommendations on harmonized procedures of primary source data verification, registration and documentation. lead by EKUT - [D.12]
Type: Document, reports...
Report and recommendations on harmonized procedures of primary source data verification, registration and documentation.
List of variables that will be selected to link the PARTNER to the virtual consultation system. lead by EKUT - [D.13]
Type: Other
List of variables that will be selected to link the PARTNER to the virtual consultation system.
Linkage of the EU VRT to the virtual consultation system. lead by AOPD - [D.14]
Type: Other
Linkage of the EU VRT to the virtual consultation system.
Registry structure fully operative. lead by AOPD - [D.15]
Type: Other
Registry structure fully operative.
Final report describing the data acquired in the EU VRT registry. lead by AOPD - [D.16]
Type: Document, reports...
Final report describing the data acquired in the EU VRT registry.
List of VRT that need standard of care elaboration. lead by CURIE - [D.17]
Type: Other
List of VRT that need standard of care elaboration.
Development of standard of care recommendations for paediatric very rare tumours. lead by CURIE - [D.18]
Type: Other
Development of standard of care recommendations for paediatric very rare tumours.
Report describing the results of the EU survey. lead by GUMed - [D.19]
Type: Document, reports...
Report describing the results of the EU survey.
Creation of a manual (in English and local language) to access the virtual consultation system and the PARTNER VRT platform. lead by GUMed - [D.20]
Type: Other
Creation of a manual (in English and local language) to access the virtual consultation system and the PARTNER VRT platform.
Dedicated access to the PARTNER for selected LHEAR countries. lead by GUMed - [D.21]
Type: Other
Dedicated access to the PARTN-ER for selected LHEAR countries.
Preparation of the final Evaluation Report. lead by CCRI - [D.7]
Type: Document, reports...
Published on: 03/03/2022

Preparation of the final Evaluation Report.
Report on the operative status of the registry structure. lead by AOPD - [D.11]
Type: Other
Published on: 01/03/2022

The registry structure is expected to be fully operative at this stage and a report will be compiled.
Development of standard of care recommendations for paediatric very rare tumours. lead by CURIE - [D.13]
Type: Other
Published on: 01/03/2022

Development of standard of care recommendations for paediatric very rare tumours.
Creation of a manual (in English and local language) to access the virtual consultation system and the PARTNER VRT platform. lead by GUMed - [D.15]
Type: Other
Published on: 01/03/2022

Creation of a manual (in English and local language) to access the virtual consultation system and the PARTNER VRT platform.
Preparation of the Interim Report. lead by CCRI - [D.6]
Type: Document, reports...
Published on: 18/03/2020

Preparation of the Interim Report.
Report and recommendations on harmonized procedures of primary source data verification, registration and documentation. lead by EKUT - [D.9]
Type: Document, reports...
Published on: 18/03/2020

Report and recommendations on harmonized procedures of primary source data verification, registration and documentation.
List of variables that will be selected to link the PARTNER to the virtual consultation system. lead by EKUT - [D.10]
Type: Other
Published on: 18/03/2020

List of variables that will be selected to link the PARTNER to the virtual consultation system.
Report describing the results of the EU survey. lead by GUMed - [D.14]
Type: Document, reports...
Published on: 18/03/2020

Report describing the results of the EU survey.
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. lead by EKUT - [D.8]
Type: Other
Published on: 13/03/2019

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.
List of VRT that need standard of care elaboration. lead by CURIE - [D.12]
Type: Other
Published on: 19/07/2018

List of VRT that need standard of care elaboration.
Leaflet. lead by CCRI - [D.2]
Type: Other
Published on: 05/06/2018

Numbered in the proposal as (MD.3). A leaflet to promote the project must be produced at the beginning.
Quality Assurance Plan (QUAP) is completed. lead by CCRI - [D.5]
Type: Document, reports...
Published on: 17/05/2018

Quality Assurance Plan (QUAP) is completed.
Dissemination & Communication plan established. lead by CCRI - [D.1]
Type: Document, reports...
Published on: 23/04/2018

Dissemination & Communication plan are established in order to assure proper outreach to stakeholders.
Project website launched. lead by CCRI - [D.3]
Type: Websites, patent filling, videos etc
Published on: 23/04/2018

Numbered in the proposal as (MD.5). Each project must have a dedicated web-site / web-pages. This can have a public part and another one accessible only to the applicants.
Details
Start date: 01/01/2018
End date: 31/12/2021
Duration: 36 month(s)
Current status: Finalised
Programme title: 3rd Health Programme (2014-2020)
EC Contribution: € 399 985,00