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An Operational EPICARE Registry for all Rare and Complex Epilepsies [EPICARE-GRANT] [947664] - Project
Layman
MD2 Layman version lead by HCL - [D.18]
Type: Document, reports...
Published on: 04/08/2022

overall report for broad public

Other deliverables - 18 output(s)

D6.1 legal map lead by GOSH - [D.13]
Type: Document, reports...
Published on: 09/08/2022

Map Legal requirements of partaking countries with regards to whether ethical approval is required to launch the registry
D6.2 informed consent lead by GOSH - [D.14]
Type: Document, reports...
Published on: 09/08/2022

Develop or adopt patient informed consent form (in line with the ERN registry task-force consensus)
D6.3 sharing agreement lead by GOSH - [D.15]
Type: Document, reports...
Published on: 09/08/2022

Develop or adopt data sharing agreement (in line with the ERN registry task-force consensus
D6.4 Final report Governance lead by GOSH - [D.16]
Type: Document, reports...
Published on: 09/08/2022

Final report (governance performance)
D1.1 procedural report lead by KU Leuven - [D.1]
Type: Document, reports...
Published on: 04/08/2022

Development of subcontracting procedure (M3)
D2.1 webinar lead by HCL - [D.2]
Type: Websites, patent filling, videos etc
Published on: 04/08/2022

A webinar for all HCPs explaining the rational of the choices made by the team
D2.2 Rationale lead by HCL - [D.3]
Type: Document, reports...
Published on: 04/08/2022

A centrally produced rationale for HCPs on the importance to accelerate the installation of REDCap at all centres members of EpiCARE
D2.3 Progress report Dissemination lead by HCL - [D.4]
Type: Document, reports...
Published on: 04/08/2022

A comprehensive report after each annual workshop focusing on the development of projects using the Registry
D3.1 annual report evaluation lead by HCL - [D.5]
Type: Document, reports...
Published on: 04/08/2022

Annual report of progress (local implementation, time assessment, number of patients and research projects, links with other registries/databases) to be presented at the General Assembly of EpiCARE
D3.2 final report evaluation lead by HCL - [D.6]
Type: Document, reports...
Published on: 04/08/2022

Final report of progress (local implementation, time assessment, number of patients and research projects, links with other registries/databases) to be presented at the General Assembly of EpiCARE
D4.1 Core dataset lead by GOSH - [D.7]
Published on: 04/08/2022

defined core dataset
D4.2 Multisite data entry lead by GOSH - [D.8]
Published on: 04/08/2022

Ability for multisite data entry
D4.3 Data migration lead by GOSH - [D.9]
Published on: 04/08/2022
REDCap instruments and data migration from UCL to GOSH
D4.4 Operability Registry lead by GOSH - [D.10]
Published on: 04/08/2022
Operability of centralised registry with Orphanet and WHO coding
D5.1 Pseudonymisation lead by GOSH - [D.11]
Published on: 04/08/2022
EUPID pseudonym code generation from REDCap
D5.2 real time table lead by GOSH - [D.12]
Type: Websites, patent filling, videos etc
Published on: 04/08/2022

Real time table per epilepsy category
MD1 Leaflet lead by HCL - [D.17]
Type: Document, reports...
Published on: 04/08/2022

leaflet with project information
MD3 Website lead by HCL - [D.19]
Type: Websites, patent filling, videos etc
Published on: 04/08/2022

development of dedicated website
Details
Start date: 01/05/2020
End date: 30/04/2022
Duration: 24 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: € 399 756,00
Keywords: Common Data Elements, Epilepsy, Epilepsy, Eupid, Fair, Interoperable, Orphanet, Registry
Website