Deliverables
Final document describing the NEURONET data and knowledge management policy especially referring to the IMI ND Knowledge Base INKB
Initial Data & Knowledge Management PlanOutline for the NEURONET data and knowledge management policy, especially referring to the ‘IMI ND Knowledge Base’ (INKB).
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 3The 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 1The 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.
INKB web platform v2Updated version of the web platform.
INKB web platform v1First version of the web platform.
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 v2A 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 portfolioA 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 v1This 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 useFirst 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 activitiesA 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 v2This 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 sustainabilityDocument 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 sustainabilityUpdated 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 analysisThis 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 diseasesReport 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 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 privacyFinal 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 privacyThe 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
Author(s):
Carlos Díaz, Lewis Killin and Nigel Hughes
Published in:
Frontiers in Neurology, Issue 16642295, 2022, ISSN 1664-2295
Publisher:
Frontiers Research Foundation
DOI:
10.3389/fneur.2022.1050360
Author(s):
O’Rourke D, Coll-Padrós N, Bradshaw A, Killin L, Pradier L, Georges J, Dawoud DM, Steukers L and Diaz C
Published in:
Frontiers in Neurology, Issue 13994301, 2022, ISSN 1399-4301
Publisher:
Frontiers in Neurology
DOI:
10.3389/fneur.2022.994301
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