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RD REGISTRY DATA WAREHOUSE [REGISTRY WAREHOUSE] [777295] - Project
Layman
Layman version of the final report lead by UNIKLINIK FFM - [D.4]
Type: Document, reports...
This is a short (e.g. 10 pages) version of the final report, written for the interested public as a target group.
Layman version of the final report lead by UNIKLINIK FFM - [D.1]
Type: Document, reports...
Published on: 11/05/2022

This is a short (e.g. 10 pages) version of the final report, written for the interested public as a target group.

Other deliverables - 28 output(s)

Second interim report lead by UNIKLINIK FFM - [D.2]
Type: Document, reports...
This report describes the activities carried out, milestones and results achieved in the first half of the project. Deliverables can be attached as annexes.
Final report lead by UNIKLINIK FFM - [D.3]
Type: Document, reports...
This report describes the project implementation and the results achieved. The deliverables are annexed.
Leaflet lead by UNIKLINIK FFM - [D.6]
Type: Document, reports...
A leaflet to promote the project must be produced at the beginning
Website lead by UNIKLINIK FFM - [D.7]
Type: Websites, patent filling, videos etc
Each project must have a dedicated web-site / web-pages. This can have a public part and another one accessible only to the applicants.
Scientific publication lead by UNIKLINIK FFM - [D.8]
Type: Document, reports...
Publication in scientific journal.
Evaluation plan lead by UNIKLINIK FFM - [D.9]
Type: Document, reports...
List of indicators and time line
Publication of users’ feedback lead by UNIKLINIK FFM - [D.10]
Type: Other
Publication in scientific meeting and/or journal.
List and description of the registry elements (ERN-LUNG REGISTRY) lead by UNIKLINIK FFM - [D.11]
Type: Other
This list includes the registry’s data elements the applicants agreed upon, along with descriptions and data type definitions.
User guide for the ERN-LUNG registry lead by UNIKLINIK FFM - [D.12]
Type: Document, reports...
This guide contains brief instructions for users unexperienced in working with the ERN-LUNG registry.
List and description of the registry elements (POPULATION REGISTRY) lead by UNIKLINIK FFM - [D.13]
Type: Other
This list includes the registry’s data elements the applicants agreed upon, along with descriptions and data type definitions.
User guide for the POPULATION REGISTRY lead by UNIKLINIK FFM - [D.14]
Type: Document, reports...
This guide contains brief instructions for users unexperienced in working with the population registry.
Definition and description of the CDS for ERN-LUNG lead by UNIKLINIK FFM - [D.15]
Type: Other
This list includes the data elements to be used as the CDS for ERN-LUNG, along with descriptions and data type definitions.
Definition of extended API including additional RMDR features lead by UNIKLINIK FFM - [D.16]
Type: Other
This document describes the adapted API of the MDR to include the new functionality of the RMDR.
Technical documentation for connecting additional registries lead by UNIKLINIK FFM - [D.17]
Type: Document, reports...
This document describes the necessary steps to connect additional disease specific registries to the ID-Management component.
Scientific publication lead by UNIKLINIK FFM - [D.5]
Type: Document, reports...
Published on: 28/04/2020

Publication in scientific journal.
Publication of users' feedback lead by UNIKLINIK FFM - [D.7]
Type: Other
Published on: 28/04/2020

Publication in scientific meeting and/or journal.
ERN-LUNG Registry lead by UNIKLINIK FFM - [D.15]
Type: Other
Published on: 28/04/2020

ERN-LUNG registry is ready and can be used
Evaluation plan lead by UNIKLINIK FFM - [D.6]
Type: Document, reports...
Published on: 10/07/2019

List of indicators and time line
List and description of the registry elements (ERN-LUNG REGISTRY) lead by UNIKLINIK FFM - [D.8]
Type: Other
Published on: 10/07/2019

This list includes the registry’s data elements the applicants agreed upon, along with descriptions and data type definitions.
User guide for the ERN-LUNG registry lead by UNIKLINIK FFM - [D.9]
Type: Document, reports...
Published on: 10/07/2019

This guide contains brief instructions for users unexperienced in working with the ERN-LUNG registry.
User guide for the POPULATION REGISTRY lead by UNIKLINIK FFM - [D.11]
Type: Document, reports...
Published on: 10/07/2019

This guide contains brief instructions for users unexperienced in working with the population registry.
Technical documentation for connecting additional registries lead by UNIKLINIK FFM - [D.14]
Type: Document, reports...
Published on: 10/07/2019

This document describes the necessary steps to connect additional disease specific registries to the ID-Management component.
Definition of extended API including additional RMDR features lead by UNIKLINIK FFM - [D.13]
Type: Other
Published on: 15/05/2019

This document describes the adapted API of the MDR to include the new functionality of the RMDR.
Dissemination plan lead by UNIKLINIK FFM - [D.2]
Type: Document, reports...
Published on: 10/04/2019

List of measures for outreach, training and research publications
Website lead by UNIKLINIK FFM - [D.4]
Type: Websites, patent filling, videos etc
Published on: 10/04/2019

Each project must have a dedicated web-site / web-pages. This can have a public part and another one accessible only to the applicants.
List and description of the registry elements (POPULATION REGISTRY) lead by UNIKLINIK FFM - [D.10]
Type: Other
Published on: 10/04/2019

This list includes the registry’s data elements the applicants agreed upon, along with descriptions and data type definitions.
Definition and description of the CDS for ERN-LUNG lead by UNIKLINIK FFM - [D.12]
Type: Other
Published on: 10/04/2019

This list includes the data elements to be used as the CDS for ERN-LUNG, along with descriptions and data type definitions.
Leaflet lead by UNIKLINIK FFM - [D.3]
Type: Document, reports...
Published on: 19/07/2018

A leaflet to promote the project must be produced at the beginning
Details
Start date: 01/04/2018
End date: 30/11/2021
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-06-2016) Rare diseases - support for New Registries
Topic: (PJ-06-2016) Rare Disease Registries
EC Contribution: € 401 904,83
Keywords: Disease Specific Registry, Ern, Ern Registry, Interoperability, Meta Data Repository, Population Registry, Rare Disease, Registry, Registry Of Registries
Website