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VASCERN Specific Grant Agreement Proposal (Action Plan Year 2: March 2018-February 2019) [VASCERN] [811609] - Operating Grant
Newsletter
Monthly Newsletters lead by APHP - [D.13]
Type: Websites, patent filling, videos etc
Published on: 22/05/2019

Tool: monthly newsletters available
Clinical case discussions lead by APHP - [D.1]
Type: Document, reports...
Published on: 22/05/2019

Report on the clinical case discussions conducted on the CPMS during Y2, including: number of patient case discussions by RDWG, number of summary of case discussions available and summary available fo...
Report on the clinical case discussions conducted on the CPMS during Y2, including: number of patient case discussions by RDWG, number of summary of case discussions available and summary available for education. Case discussion monthly, but report M12. Milestone: M6, control point on the implementation.
Improved Patient pathways lead by APHP - [D.2]
Type: Document, reports...
Published on: 22/05/2019

Publication: 5 improved patient pathways (1 by RDWGs) available for publication, dissemination and translations. M6 milestone: control point on drafts
VASCERN App, version 2 lead by APHP - [D.3]
Type: Websites, patent filling, videos etc
Published on: 22/05/2019

Tool: availability of VASCERN App version 2 M12. M1-M12 Regular updates and adding new informations on the online back office. M6: milestone, definition of new settings by eHealth WG.
Pills of Knowledge lead by APHP - [D.4]
Type: Websites, patent filling, videos etc
Published on: 22/05/2019

Tool (videos, content available on the website): availability of new Pills of Knowledge on VASCERN YouTube (15 PoK videos) and on our website (links towards PoK, multilingual education material), and ...
Tool (videos, content available on the website): availability of new Pills of Knowledge on VASCERN YouTube (15 PoK videos) and on our website (links towards PoK, multilingual education material), and translations of patient information material. M6 milestone: control point
Registry lead by APHP - [D.5]
Type: Document, reports...
Published on: 22/05/2019

Report on the progresses done (FAIR, pilot project, use of the EU common minimal dataset, definition of disease specific RDWG datasets)
Clinical trial lead by APHP - [D.6]
Type: Document, reports...
Published on: 22/05/2019

Report on the clinical trials and scientific research projects. Report including state of play regarding the launch of 1 clinical trial within VASCERN
Research news lead by APHP - [D.7]
Type: Websites, patent filling, videos etc
Published on: 22/05/2019

Website: regular publication of “research news” on the website/ monthly newsletters
YouTube Channel lead by APHP - [D.8]
Type: Websites, patent filling, videos etc
Published on: 22/05/2019

Availability of at least 30 additional videos on VASCERN YouTube Channel (including 15 PoK videos)
M6 milestone: control point
Clinical outcome measures lead by APHP - [D.9]
Type: Document, reports...
Published on: 22/05/2019

Report based on the work of the rare diseases WG within VASCERN. Definition of 1 clinical outcome measures by RDWG.
Clinical Practice Guidelines (CPGs) lead by APHP - [D.10]
Type: Document, reports...
Published on: 22/05/2019

Publication of 4 new CPG (expert consensus statement, recommendation, guidelines). RDWGs involved: HHT, HTAD, MSA and PPL. M6 milestone: control point
Do’s and Don’ts Factsheets lead by APHP - [D.11]
Type: Document, reports...
Published on: 22/05/2019

Publication of 2 new RDWG Do’s and Don’ts Factsheets for rare diseases patients facing frequent situation. RDWGs involved: PPL and VASCA. Possible updates of existing factsheets for the other RDWG...
Publication of 2 new RDWG Do’s and Don’ts Factsheets for rare diseases patients facing frequent situation. RDWGs involved: PPL and VASCA. Possible updates of existing factsheets for the other RDWGs. M6 milestone: control point
Website lead by APHP - [D.12]
Type: Websites, patent filling, videos etc
Published on: 22/05/2019

Website existing and regularly updated with new content, pages, updates made
Social networks lead by APHP - [D.14]
Type: Websites, patent filling, videos etc
Published on: 22/05/2019

Tool: social network pages existing (Twitter, Facebook, YouTube) with regular updates, new content. Report: analysis of communication tools and impacts
Evaluation Report lead by APHP - [D.15]
Type: Document, reports...
Published on: 22/05/2019

Depending on the progress of the interERN / Board of Member States level framework to monitor and assess ERN activities, an evaluation report will be provided based on the indicators and monitoring to...
Depending on the progress of the interERN / Board of Member States level framework to monitor and assess ERN activities, an evaluation report will be provided based on the indicators and monitoring tool defined by the interERN framework.