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European Registry for Rare Bone and Mineral Conditions [EuRR-Bone] [946831] - Project
Newsletter
Newsletters lead by IOR - [D.5]
Type: Websites, patent filling, videos etc
Published on: 02/12/2021

EuRR-Bone Newsletter
Layman
Layman version of the final report lead by IOR - [D.4]
Type: Document, reports...
Expected on: 31/03/2023
Layman version of the final report on EuRR-Bone will be produced for the general public

Other deliverables - 16 output(s)

Report on sustainability lead by LUMC - [D.2]
Type: Document, reports...
Expected on: 30/04/2022
Reporting on sustainability of the EuRR-Bone registry in the future
Release FAIR compliant API for rare bone disease data lead by UH MOTOL - [D.9]
Type: Document, reports...
Expected on: 31/03/2022
Report on a FAIR compliant API for rare bone disease data and use in EuRR-Bone
Final report on Interoperability and Quality Assurance & Evaluation lead by UH MOTOL - [D.10]
Type: Document, reports...
Expected on: 31/03/2023
Report on the specific Interoperability and Quality Assurance of the EuRR-Bone project
Final Report on implementation of the Core Registry and PRO for disease specific modules lead by UOXF - [D.11]
Type: Document, reports...
Expected on: 31/03/2023
Report regarding the patient related outcomes as implemented in EuRR-Bone in the Core Registry and disease specific modules
Final report on Core registry and disease specific modules lead by RUB - [D.14]
Type: Document, reports...
Expected on: 31/03/2023
Report regarding the clinical outcomes as implemented in EuRR-Bone in the Core Registry and disease specific modules
Report patient outcomes of the disease specific modules lead by UOXF - [D.16]
Type: Document, reports...
Expected on: 31/03/2022
Report on the performance of the patient related outcomes of the disease specific modules within EuRR-Bone
Beta version of the EuRR-Bone Patient Platform lead by UOXF - [D.17]
Type: Demonstrator, pilot, prototype
Expected on: 30/09/2022
Test version for patients to test accessibility
EuRR-Bone Patient Platform lead by UOXF - [D.18]
Type: Websites, patent filling, videos etc
Expected on: 31/03/2023
Platform website working
Website lead by LUMC - [D.1]
Type: Websites, patent filling, videos etc
Published on: 02/12/2021

Website with information on EuRR-Bone will be produced and will have a public part as well as a participant only part with can be used for reporting.
Leaflet lead by IOR - [D.3]
Type: Websites, patent filling, videos etc
Published on: 02/12/2021

Project leaflet on EuRR-Bone will be produced
Data Access Policy lead by IOR - [D.6]
Type: Document, reports...
Published on: 02/12/2021

Report on future access policy of EuRR-Bone
Report on access, publication and dissemination strategy lead by IOR - [D.7]
Type: Document, reports...
Published on: 02/12/2021

Reporting on access and dissemination of the EuRR-Bone registry within the community
Guidelines for FAIR core data elements lead by UH MOTOL - [D.8]
Type: Document, reports...
Published on: 02/12/2021

Report on the use of FAIR core data elements in EuRR-Bone
Report on clinical outcomes for the Core registry and selected variables lead by RUB - [D.12]
Type: Document, reports...
Published on: 02/12/2021

Report on guidelines and standards to use for the clinical outcomes of the disease specific modules
Report on clinical outcomes lead by RUB - [D.13]
Type: Document, reports...
Published on: 02/12/2021

Report on clinical outcomes to be incorporated into the Core registry of EuRR-Bone
Report on the disease specific datasets for the disease specific modules lead by UOXF - [D.15]
Type: Document, reports...
Published on: 02/12/2021

Reporting on the disease specific datasets for the disease specific modules of EuRR-Bone
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: Bone, Conditions, Interoperable, Mineral, Outcomes, Patients, Quality Assurance, Rare, Registries
Website