Efficiently Networking European Neurodegeneration Research

Livrables

Final document describing the NEURONET data and knowledge management policy especially referring to the IMI ND Knowledge Base INKB

Initial Data & Knowledge Management Plan

Outline for the NEURONET data and knowledge management policy, especially referring to the ‘IMI ND Knowledge Base’ (INKB).

Public event proceedings and videos – Year 2

The public part of the yearly events will be minuted and filmed. The proceedings and videos of the event will be made available on the NEURONET and Alzheimer Europe websites, and widely propagated through social media with the help of the communication community.

Public event proceedings and videos - Year 3

The public part of the yearly events will be minuted and filmed The proceedings and videos of the event will be made available on the NEURONET and Alzheimer Europe websites and widely propagated through social media with the help of the communication community

Public event proceedings and videos – Year 1

INKB web platform v2

Updated version of the web platform.

INKB web platform v1

First version of the web platform.

Map of relevant initiatives and gap analysis v1

A report will be developed to inform IMI and other stakeholders on the results of the mapping and gap analysis, including recommendations for future activities that could be topics for IMI projects or funded by other means.

"Report #2 on activity of SCB, WGs and TFs"

Periodic report gathering details on evolution of the organisational structures, their output and updated workflows, and results of specific synergies and collaborations enabled by NEURONET.

Map of relevant initiatives and gap analysis v2

A report will be developed to inform IMI and other stakeholders on the results of the mapping and gap analysis including recommendations for future activities that could be topics for IMI projects or funded by other means

Final report on impact of IMI neurodegeneration portfolio

A report will be developed to inform IMI on the results of the impact analysis including recommendations to increase impact and better use project outputs

Integrated programme analysis v1

This deliverable will offer a first integrated view on the whole IMI ND project portfolio, with proposed actionable items to exploit potential synergies and collaborations.

First version on guidance tools on data/sample sharing and use

First document providing guidance on how data and sample sharing can be facilitated across IMI projects and with the wider research community.

Interim report on dissemination activities

A detailed list of dissemination activities will be carried out halfway through the coordination and support action. The report will assess the impact of undertaken communication activities, analyse their compliance with the initial plan and identify future dissemination opportunities as updates to the communication strategy.

Integrated programme analysis v2

This deliverable will offer an updated integrated view on the whole IMI ND project portfolio with proposed actionable items to exploit potential synergies and collaborations

First version of guidance on sustainability

Document describing a catalogue of sustainability models used in, or applicable to IMI neurodegeneration projects – including legal, IP, technical, financial, organisational considerations.

Final version of guidance on sustainability

Updated document with a complete catalogue of sustainability models used in or applicable to IMI neurodegeneration projects practical advice and tools for decision making including legal IP technical financial organisational and business model considerations

"Report #1 on activity of SCB, WGs and TFs"

Periodic report gathering details on evolution of the organisational structures, their output and updated workflows, and results of specific synergies and collaborations enabled by NEURONET.

First report on impact of IMI neurodegeneration portfolio.

A report will be developed to inform IMI on the results of the impact analysis, including recommendations to increase impact and better use project outputs.

White paper on project impact analysis

This deliverable will report on the lessons learned through the impact analysis exercises for future reference

Final report on dissemination and outreach activities (including impact measures)

The final report will compile all undertaken dissemination activities and evaluate their impact also reporting on all the tools developed to support these activities

"Report #3 on activity of SCB, WGs and TFs"

Periodic report gathering details on evolution of the organisational structures their output and updated workflows and results of specific synergies and collaborations enabled by NEURONET

White paper on regulatory, HTA, and payer strategy for neurodegenerative diseases

Report on the challenges faced in engagement with regulatoryHTA agencies as informed by the interaction with IMI ND projects and the lessons learned through the HTAregulatory WG activities

Final version on guidance tools on data/sample sharing and use

Final version of guidance and tools supporting how data and sample sharing can be facilitated across IMI projects and with the wider research community. It will include an assessment of uptake/impact of such guidance across the IMI ND portfolio.

Final version of guidance on standards and practices for protecting data privacy

Final version of tools and guidance on the legal and practical aspects of data privacy laws with a particular focus on the changes made necessary by the General Data Protection Regulation (GDPR). It will include an assessment of uptake/impact of such guidance across the IMI ND portfolio.

First version of guidance on standards and practices for protecting data privacy

The project will provide guidance on the legal and practical aspects of data privacy laws with a particular focus on the changes made necessary by the General Data Protection Regulation (GDPR). It will include recommendations on informed consent, with a first template providing the minimum standards which should be included in informed Consent Forms for trials and research studies in IMI projects. This will provide guidance for the inclusion of clauses allowing explicit data and sample sharing and for research participants to be re-contacted for future research opportunities.

Publications

Avoiding fragmentation: The potential of synergistic efforts across the IMI portfolio

Auteurs: Carlos Díaz, Lewis Killin and Nigel Hughes
Publié dans: Frontiers in Neurology, Numéro 16642295, 2022, ISSN 1664-2295
Éditeur: Frontiers Research Foundation
DOI: 10.3389/fneur.2022.1050360

The Innovative Medicines Initiative neurodegeneration portfolio: From individual projects to collaborative networks

Auteurs: O’Rourke D, Coll-Padrós N, Bradshaw A, Killin L, Pradier L, Georges J, Dawoud DM, Steukers L and Diaz C
Publié dans: Frontiers in Neurology, Numéro 13994301, 2022, ISSN 1399-4301
Éditeur: Frontiers in Neurology
DOI: 10.3389/fneur.2022.994301

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