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The ERN-RND Rare Neurological Disease Registry [ERN-RND Registry] [947588] - Project
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