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The ERN-RND Rare Neurological Disease Registry [ERN-RND Registry] [947588] - Project
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Summary
Partners
Work package's
Outputs
Layman
Layman version of the final report lead by
UKT
- [D.15]
Type:
Document, reports...
Expected on:
31/03/2023
Layman version of the final report
Other deliverables - 15 output(s)
Evaluation report 2 lead by
UKT
- [D.5]
Type:
Document, reports...
Expected on:
31/03/2022
Evaluation report 2 produced
Justification for confidential status: Contains sensitive information on submitted patient data.
Evaluation report 3 lead by
UKT
- [D.6]
Type:
Document, reports...
Expected on:
31/03/2023
Evaluation report 3 produced
Justification for confidential status: Contains sensitive information on submitted patient data.
Mapping report for all ERN-RND centres lead by
UKT
- [D.11]
Type:
Document, reports...
Expected on:
30/06/2022
Mapping report for all ERN-RND centres finalised
Justification for confidential status: Contains sensitive information on submitted patient data.
Analysis report for key performance and outcome indicators lead by
UKT
- [D.13]
Type:
Document, reports...
Expected on:
31/03/2023
Analysis report for key performance and outcome indicators produced
Registry Manual lead by
UKT
- [D.10]
Type:
Document, reports...
Published on:
06/02/2022
Registry Manual produced
Evaluation report 1 lead by
UKT
- [D.4]
Type:
Document, reports...
Published on:
03/02/2022
Evaluation report 1 produced
Justification for confidential status: Contains sensitive information on submitted patient data.
ERN-RND Registry developed lead by
UKT
- [D.7]
Type:
Other
Published on:
03/02/2022
ERN-RND Registry developed using the RedCap database platform
Privacy and Protection measures consented lead by
UKT
- [D.9]
Type:
Document, reports...
Published on:
03/02/2022
Privacy and Protection measures consented
Key performance and outcome indicators lead by
UKT
- [D.12]
Type:
Document, reports...
Published on:
03/02/2022
Key performance and outcome indicators determined
Project manual lead by
UKT
- [D.1]
Type:
Document, reports...
Published on:
09/02/2021
Project manual available
Project risk management plan lead by
UKT
- [D.2]
Type:
Document, reports...
Published on:
09/02/2021
Project risk management plan approved
Dissemination plan lead by
UKT
- [D.3]
Type:
Document, reports...
Published on:
09/02/2021
Dissemination plan generated
Data plausibility checks implemented lead by
UKT
- [D.8]
Type:
Other
Published on:
09/02/2021
Data plausibility checks implemented for collection of data
Leaflet lead by
UKT
- [D.14]
Type:
Document, reports...
Published on:
09/02/2021
Leaflet
Website lead by
UKT
- [D.16]
Type:
Websites, patent filling, videos etc
Published on:
09/02/2021
Website
Details
Start date:
01/04/2020
End date:
31/03/2023
Duration:
36 month(s)
Current status:
Finalised
Programme title:
3rd Health Programme (2014-2020)
Programme Priority:
4. Facilitate access to better and safer healthcare for Union citizens (3HP.1.1.4.)
Call:
(HP-PJ-2019) Call for Proposals for Projects 2019
Topic:
(PJ-01-2019) Rare disease registries for the European Reference Networks (Heading 2.1 of the AWP 2019)
EC Contribution:
€ 400 000,00
Keywords:
European Reference Network
,
Patient Registry
,
Rare Neurological Diseases
Website