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ILIAD Rare Diseases patient registry: an International Library of Intellectual disability and Anomalies of Development [ILIAD] [947617] - Project
Newsletter
Newsletter lead by AP-HP - [D.2]
Type: Document, reports...
Published on: 15/02/2022

Newsletter with “registry” section in ITHACA newsletter
Will be reiterated every 6 months (MO 12, 18, 24, 30)

Other deliverables - 16 output(s)

Core registry lead by UMCG - [D.5]
Type: Websites, patent filling, videos etc
Expected on: 31/03/2021
A web-based registry is accessible
Portable registry lead by UMCG - [D.6]
Type: Websites, patent filling, videos etc
Expected on: 30/09/2021
A portable version of the registry is available
Interoperability lead by UMCG - [D.7]
Type: Websites, patent filling, videos etc
Expected on: 31/03/2022
Portable registries from 2 HCPs are connected/interoperable with the Central registry
V2 lead by UMCG - [D.8]
Type: Websites, patent filling, videos etc
Expected on: 31/03/2023
V2 is available
Subregistry task forces are created lead by AP-HP - [D.11]
Type: Other
Expected on: 31/03/2022
At least 2 task forces are created
Registry interactions lead by AOUS - [D.14]
Type: Other
Expected on: 30/09/2022
At least 2 external registries connected
Biobank interactions lead by OPBG - [D.15]
Type: Other
Expected on: 30/09/2022
At least 1 biobank connected
Usage lead by AP-HP - [D.17]
Type: Document, reports...
Expected on: 31/03/2023
Report of scientific/medical/social use of the registry
Yearly report lead by AP-HP - [D.1]
Type: Document, reports...
Published on: 15/02/2022

General report on the construction of the registry and trans-ERN interactions
Further reports at month 24 and 36
User guide lead by AP-HP - [D.3]
Type: Document, reports...
Published on: 15/02/2022

User guide for ILIAD end users
Evaluation report lead by AP-HP - [D.4]
Type: Document, reports...
Published on: 15/02/2022

Activity and monitoring report at Board Meeting
(reterated at each board (i.e. twice a year)
Registry steering Committee lead by AP-HP - [D.9]
Type: Other
Published on: 15/02/2022

The Steering committee is established and has TC
Governance of the Registry is formalized lead by AP-HP - [D.10]
Type: Other
Published on: 15/02/2022

There is a formal Guidelines for accessing and using data
Activity report lead by AP-HP - [D.12]
Type: Document, reports...
Published on: 15/02/2022

A yearly report of registry activity, posted on ITHACA website and on the registry website, and presented at the Board meetings.
(reiterated once a year, at the board)
Guide for external registries lead by AOUS - [D.13]
Type: Document, reports...
Published on: 15/02/2022

A manual for connecting external databases published on ILIAD website
(updates at MO 24 ad 36)
Ethics lead by AP-HP - [D.16]
Type: Other
Published on: 15/02/2022

Ethics committee set up
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: € 396 238,00
Keywords: Ern, Genetics, Ithaca, Rare Diseases, Registry
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