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European Reference Network for Rare Neurological Diseases - SGA years 3-5 [ERN-RND] [844802] - Operating Grant
WP1 Coordination, management, communication and quality assurance of ERN-RND activities by lead UKT

Start month:1 - End month: 36

Activities:
Implement communication plan
Have a robust process in place to monitor activity
Create a forward-looking network with future potential
Coordinate and implement call for new ERN HCPs, l...
Activities:
Implement communication plan
Have a robust process in place to monitor activity
Create a forward-looking network with future potential
Coordinate and implement call for new ERN HCPs, link to associate centres and national coordination hubs

Evaluation of ERN-RND activities by lead UKT

Start month:1 - End month: 36

Collate and analyse outcome measures
Plan, perform and monitor corrective actions
Develop and implement patient safety framework
Jointly with EURORDIS and other ERNs develop common tool for measuring ...
Collate and analyse outcome measures
Plan, perform and monitor corrective actions
Develop and implement patient safety framework
Jointly with EURORDIS and other ERNs develop common tool for measuring patient experience

RND diagnostic pathway by lead UKT

Start month:1 - End month: 36

Share and promote implemetation of diagnostic RND flowcharts
Develop generic diagnostic pathway for genetically caused RND
Introduce and implement EQA scheme for genetic RND diagnostics
Share multidi...
Share and promote implemetation of diagnostic RND flowcharts
Develop generic diagnostic pathway for genetically caused RND
Introduce and implement EQA scheme for genetic RND diagnostics
Share multidisciplinary diagnostic expertise in ERN-RND in a case-based manner
Plan and pilot CPMS use for diagnosis and care advice of external patients

Expert RND care coordination by lead UKT

Start month:1 - End month: 36

Improve access to high quality care in terms of awareness of centres and disease knowledge
Respond to most important care needs of RND
Consent, share, implement and supervise standards of care regardi...
Improve access to high quality care in terms of awareness of centres and disease knowledge
Respond to most important care needs of RND
Consent, share, implement and supervise standards of care regarding diagnosis and therapy
Working groups on additional care aspects that will profit from standardisation
Tight collaboration with other ERNs to improve care for RD patients
Review composition of multidisciplinary teams

WP5 Training, education and capacity building by lead UKT

Start month:1 - End month: 36

Implement ERN-RND programme
Establish alert mechanism for rapid dissemination of NEW information
Improve access to educational resources
Information sharing and disease resources by lead UKT

Start month:1 - End month: 36

Communicate effectively making use of IT
Improve provision of disease care resources to HCPs
Establish ERN-RND open access scientific library on care standards
Share experience of the added value of ...
Communicate effectively making use of IT
Improve provision of disease care resources to HCPs
Establish ERN-RND open access scientific library on care standards
Share experience of the added value of ERNs

Guidelines, pathways and best practice by lead UKT

Start month:1 - End month: 36

Engage with European Brain Council’s (EBC) Value Of Treatment (VOT) project
Improve patient care through use of high quality guidelines
Put in place a process for RD European guideline development
...
Engage with European Brain Council’s (EBC) Value Of Treatment (VOT) project
Improve patient care through use of high quality guidelines
Put in place a process for RD European guideline development
Develop cross-boarder pathways

Registries and research by lead UKT

Start month:1 - End month: 36

Through establishment of the ERN, enhance research programmes, participation, uptake and publications
Expand scope of European RND registry
Demonstrate value of RND registries with regard to trial ...
Through establishment of the ERN, enhance research programmes, participation, uptake and publications
Expand scope of European RND registry
Demonstrate value of RND registries with regard to trial readiness

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