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ERNICA-registry for improving care [ERNICA registry] [947662] - Project
Newsletter
Newsletter lead by ERASMUS MC - [D.6]
Type: Document, reports...
Published on: 24/10/2021

6-monthly newsletter
Layman
MD Layman version of the final report lead by ERASMUS MC - [D.4]
Type: Document, reports...
Expected on: 31/03/2023
Layman version of the final report

Other deliverables - 13 output(s)

Registry User Satisfaction Report lead by ERASMUS MC - [D.7]
Type: Document, reports...
Expected on: 31/03/2023
Registry User Satisfaction Report
Registry Implementation Report lead by DICA - [D.8]
Type: Document, reports...
Expected on: 31/03/2023
Registry Implementation Report
Development of new registries lead by DICA - [D.10]
Type: Document, reports...
Expected on: 31/03/2023
Development of 2 new registries in ERNICA, including clinician reported data, PROMs, prenatal data, long term outcomes
Interoperability Report lead by DICA - [D.14]
Type: Document, reports...
Expected on: 31/03/2023
Report on interoperability with external registries.
Report on sustainability / future of registry lead by ERASMUS MC - [D.15]
Type: Document, reports...
Expected on: 31/03/2023
Report on sustainability / future EPSA/ERNICA registry
Revision of existing registries lead by ERASMUS MC - [D.9]
Type: Document, reports...
Published on: 12/04/2022

All 6 registries updated with prenatal data, long term outcomes and PROMs
Kick-off meeting lead by ERASMUS MC - [D.1]
Type: Document, reports...
Published on: 24/10/2021

Kick-off meeting Luxemburg
Partnership agreement lead by ERASMUS MC - [D.2]
Type: Document, reports...
Published on: 24/10/2021
Partnership agreement Erasmus MC-DICA (consortium agreement)
MD Leaflet to promote ERNICA registry project lead by ERASMUS MC - [D.3]
Type: Document, reports...
Published on: 24/10/2021

Leaflet to promote ERNICA registry project
MD Registry project website lead by ERASMUS MC - [D.5]
Type: Document, reports...
Published on: 24/10/2021

Registry project website
Registry Infrastructure Report lead by DICA - [D.11]
Type: Document, reports...
Published on: 24/10/2021

Report on requirements for infrastructure based on relevant security and privacy laws and regulations in EU and participating countries.
Legal Documents lead by DICA - [D.12]
Type: Document, reports...
Published on: 24/10/2021

Legal documents (e.g. Informed Consent Form)
JRC Common Data Elements / ERDRI registration lead by DICA - [D.13]
Type: Document, reports...
Published on: 24/10/2021

Registration in 6 registries and ERDRI platform registration.
Details
Start date: 01/04/2020
End date: 31/03/2023
Duration: 36 month(s)
Current status: Ongoing
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
Website