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European Reference Network for Rare Neurological Diseases - SGA years 3-5 [ERN-RND] [844802] - Operating Grant
Generic diagnostic pathway for genetically caused RND lead by UKT - [D.10]
Type: Document, reports...
Published on: 02/09/2022

Generic diagnostic pathway for genetically caused RND
Recommendation for ERN-RND multidisciplinary teams lead by UKT - [D.19]
Type: Document, reports...
Published on: 02/09/2022

Will be based on existing recommendation and will take into account work being done by ERN-RND
Framework report on cross-border pathways linked to the CPMS use lead by UKT - [D.30]
Type: Document, reports...
Published on: 02/09/2022

Will be worked out for the linked national coordination hubs
RND trial readiness report lead by UKT - [D.33]
Type: Document, reports...
Published on: 02/09/2022

Will be based on a series of workshops (co)organised through ERN-RND
Evaluation report based on defined indicators lead by UKT - [D.34]
Type: Document, reports...
Published on: 02/09/2022

Indicators have been defined in the SGA. The fulfillment of these indicator will be assessed in a seperate report.
Periodic communication reports lead by UKT - [D.1]
Type: Document, reports...
Published on: 25/08/2022

Based on multichannel ERN-RND activities
Report on set-up and pilot of CPMS use for external patients lead by UKT - [D.13]
Type: Document, reports...
Published on: 23/08/2022

Set-up and pilot of CPMS use for external patients
Report on RND registry lead by UKT - [D.32]
Type: Document, reports...
Published on: 23/08/2022

The aim is that this register includes information on genotype and time of last visit at ERN-RND centre
Periodic reports based on dashboard for continous monitoring of ERN-RND activities lead by UKT - [D.2]
Type: Document, reports...
Published on: 22/08/2022

Based on BoM adopted document on continuous monitoring of ERNs
Final ERN-RND report lead by UKT - [D.26]
Type: Document, reports...
Published on: 22/08/2022

Final report after years 1-5 of ERN
Report on European Brain Council VoT case study for selected group of RND lead by UKT - [D.27]
Type: Document, reports...
Published on: 22/08/2022

This is a collaboration with the European Brain Council.
Process on RND guideline development jointly with EAN, 3 guidelines of high priority produced lead by UKT - [D.29]
Type: Document, reports...
Published on: 22/08/2022

This is a collaboration with the European Academy of Neurology (EAN).
Directory of current recruiting research studies lead by UKT - [D.31]
Type: Document, reports...
Published on: 22/08/2022

Will be included in disease knowledge section of web site
Development plan of the network lead by UKT - [D.3]
Type: Document, reports...
Published on: 21/08/2022

Will form the basis for the 2nd period application
Periodic reports on care quality indicators agreed on in ERN-RND lead by UKT - [D.5]
Type: Document, reports...
Published on: 21/08/2022

Will be disease group specific
List of corrective actions, adapted portfolio of outcome measures lead by UKT - [D.6]
Type: Document, reports...
Published on: 21/08/2022

List of corrective actions, adapted portfolio of outcome measures
List of areas for RND and applied therapies with higher risk, and respective risk minimising strategies lead by UKT - [D.7]
Type: Document, reports...
Published on: 21/08/2022

Will be disease group and service specific
Common ERN tool for measuring patient experience lead by UKT - [D.8]
Type: Demonstrator, pilot, prototype
Published on: 21/08/2022

Will depend on a respective EURORDIS led activity
Dissemination report and implementation result in ERN-RND lead by UKT - [D.9]
Type: Document, reports...
Published on: 21/08/2022

Dissemination of diagnostic flowcharts and use of them at ERN-RND centres will be put into relation
Report on EQA scheme(s) for genetic NGS RND diagnostics and pilot QA report lead by UKT - [D.11]
Type: Document, reports...
Published on: 21/08/2022

Will be done in cooperation with European Molecular Quality Network (EMQN)
Report on use of CPMS for diagnostic cases from ERN-RND partners lead by UKT - [D.12]
Type: Document, reports...
Published on: 21/08/2022

Will be based on defined CPMS use cases
Report on implemented awareness strategy for ERN-RND lead by UKT - [D.14]
Type: Document, reports...
Published on: 21/08/2022

Including google analytics of ERN-RND web site
Report on responding strategies lead by UKT - [D.15]
Type: Document, reports...
Published on: 21/08/2022

Based on the care need survey being done in ERN-RND
Reports on activities on additional care aspects like physiotherapy and Deep Brain Stimulaton for pediatric dystonia patients lead by UKT - [D.17]
Type: Document, reports...
Published on: 21/08/2022

Might be disease group cross cutting
Report of cross-ERN pilot case discussion in CPMS lead by UKT - [D.18]
Type: Document, reports...
Published on: 21/08/2022

ERN-RND will use established collaborations with Euro-NMD and ITHACA
Report on ERN-RND training and education measures lead by UKT - [D.20]
Type: Document, reports...
Published on: 21/08/2022

Will be done in collaboration with the European Academy of Neurology and the Movement Disorders Society
Web directory of training and education resources lead by UKT - [D.22]
Type: Document, reports...
Published on: 21/08/2022

Will be included in disease knowledge section of web site
Functioning website with updates, summary report of social media activities lead by UKT - [D.23]
Type: Document, reports...
Published on: 21/08/2022

The ERN-RND web site will undergo continuous development
Disease knowledge section on web site broken down to disease groups covered through ERN-RND lead by UKT - [D.24]
Type: Document, reports...
Published on: 21/08/2022

There will be a subsite per disease group
Web directory of relevant RND publications on ERN-RND web site lead by UKT - [D.25]
Type: Document, reports...
Published on: 21/08/2022

Will be included in disease knowledge section of web site
Draft recommendations for therapeutic algorithms for the disease groups covered by ERN-RND lead by UKT - [D.16]
Type: Document, reports...
Published on: 11/03/2021

Will be disease group specific
List of ERN-RND endorsed or affirmed guidelines available on ERN-RND web site lead by UKT - [D.28]
Type: Document, reports...
Published on: 11/03/2021

Will be included in disease knowledge section of web site
Report on new ERN HCPs, associate centres and national coordination hubs lead by UKT - [D.4]
Type: Document, reports...
Published on: 25/08/2020

Depends on implementation of call through BoM and European Commission
Social media based alert mechanism lead by UKT - [D.21]
Type: Document, reports...
Published on: 24/08/2020

Will be Twitter based
Details
Start date: 01/03/2019
End date: 28/02/2022
Duration: 36 month(s)
Current status: Finalised
Programme title: 3rd Health Programme (2014-2020)
EC Contribution: € 600 000,00