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European Reference Network (ERN) on Rare Multisystemic Vascular Diseases (VASCERN), SGA Proposal 2017 [VASCERN] [769036] - Operating Grant
Newsletter
Newsletter lead by APHP - [D.14]
Type: Document, reports...
Published on: 02/03/2018

Publication and
dissemination of a monthly
VASCERN Newsletter,
development of the
diffusion list
Registry lead by APHP - [D.5]
Type: Other
Published on: 08/03/2018
Simple registry dataset
(main clinical outcomes)
Inventory of registries and
biobanks
Simple factsheets lead by APHP - [D.11]
Type: Document, reports...
Published on: 08/03/2018

Factsheets for RD patient
facing common situation
Clinical case lead by APHP - [D.1]
Type: Document, reports...
Published on: 02/03/2018

Monthly RDWG discussion
on clinical cases
Patient Case report
summary available in the
shared patient case
management system
Creation of education tool
based on these summaries
Patient pathways lead by APHP - [D.2]
Type: Document, reports...
Published on: 02/03/2018

Patient pathways available
for each RDWG, for
dissemination and deriving
clinical outcomes measures
Mobile application lead by APHP - [D.3]
Type: Other
Published on: 02/03/2018

Cross border path
application available for
patients, with HCPs
Members and further
networks
Pills of knowledge lead by APHP - [D.4]
Type: Websites, patent filling, videos etc
Published on: 02/03/2018

Video/audio lessons
available for clinician elearning
Clinical trial lead by APHP - [D.6]
Type: Document, reports...
Published on: 02/03/2018

discussion withing RDWG;
publication of trials on the
every month (report)
Every 6 months (M6-M12)
website;
annual report of ongoing
and completed trials
Completion of 1 clinical
trial
Youtube lead by APHP - [D.7]
Type: Websites, patent filling, videos etc
Published on: 02/03/2018

Conferences available on
YouTube for training &
education
Simple Clinical outcome lead by APHP - [D.8]
Type: Document, reports...
Published on: 02/03/2018

Clinical outcomes
Clinical outcome lead by APHP - [D.9]
Type: Document, reports...
Published on: 02/03/2018

Disease specific
Clinical Guidelines for each RDWG for dissemination lead by APHP - [D.10]
Type: Document, reports...
Published on: 02/03/2018

Clinical Guidelines for each
RDWG for dissemination
Translation lead by APHP - [D.13]
Type: Document, reports...
Published on: 02/03/2018

Translated selected pages/
deliverables
Website lead by APHP - [D.12]
Type: Websites, patent filling, videos etc
Published on: 19/02/2018

Website
Social network pages lead by APHP - [D.15]
Type: Websites, patent filling, videos etc
Published on: 19/02/2018

Creation and use of
VASCERN pages on social
network (awareness-raising,
dissemination)
Details