Periodic Reporting for period 3 - NEURONET (Efficiently Networking European Neurodegeneration Research)
Reporting period: 2021-03-01 to 2022-08-31
What is the problem/issue being addressed?
The IMI2 JU has implemented numerous new projects in the area of neurodegeneration, covering the research and development (R&D) value chain from bench to bedside. Although several of these initiatives started leveraging on one another, an operational coordination for strengthening the information flow and enhancing the exchange of experiences and learning across projects was lacking. Moreover, there was a clear need to evaluate the impact of the investment in this research area. Effective and efficient collaboration and coordination among the IMI projects in the area of neurodegeneration was a key success factor for the important public-private investment to achieve its full impact, so the need for a tailor-made and structured support structure was evident.
Why is it important for society?
Millions of people in Europe and worldwide live with neurodegenerative diseases that can severely impact their quality of life and wellbeing. NEURONET has brought together the IMI research projects targeting neurodegenerative diseases, effectively connecting resources and facilitating synergies and collaborations amongst them, with the aim of advancing science and knowledge in this important area and bringing solutions to European citizens.
What are the overall objectives?
NEURONET ‘s main objective has been setting up an efficient platform to boost synergy and collaboration across the IMI projects of the neurodegeneration portfolio, assisting in identifying gaps, multiplying its impact, enhancing its visibility and facilitating dovetailing with related initiatives in Europe and worldwide. The overarching concept has been to collect and analyse information and assets from the various neurodegeneration initiatives supported by IMI in order to accelerate the development and implementation of novel therapeutics in this area across Europe. This has been achieved by developing a platform that, on one hand, has allowed interactions between the actors of the IMI projects, and, on the other hand, has been assessing both the intellectual and technological contributions of various projects and their potential impact. NEURONET has also allowed to identify gaps and common issues across projects and it has also assisted in the building of future projects that will address these unmet needs using the context and the building-blocks provided by the projects and research.
The specific objectives of NEURONET have been:
1. To create an overall platform for efficient collaboration, communication and operational synergies among both present and future IMI neurodegeneration projects, including transparent procedures and setting up of governance mechanisms such as coordination boards, working groups and task forces.
2. To design systems to map and analyse information regarding actions, initiatives and partnerships in order to assess impact of the individual projects, remaining gaps and global value of the programme for stakeholders using consensus metrics.
3. To deeply analyse the existing IMI neurodegeneration projects to support management of the programme, providing an overview of timelines, dependencies, potential synergies and key results across projects.
4. To proactively detect needs, opportunities and transferrable best practices of projects, and connect them to enhance value of the portfolio, effectively turning it into an integrated programme.
5. To support projects by organising tools, services, expert advice and guidelines/recommendations (including innovative approaches and ‘best of breed’ solutions from existing projects) on common issues, including (without limitation) a particular focus on: Data sharing & re-use, HTA/regulatory interaction, Patient privacy & Ethics, Sustainability.
6. To support enhancement and coordination of communication across the IMI neurodegeneration projects, increasing programme visibility to the outside world, outreaching to key stakeholders and establishing synergistic relationships with major initiatives in the field worldwide.
7. To manage and to assess its sustainability.
The IMI2 JU has implemented numerous new projects in the area of neurodegeneration, covering the research and development (R&D) value chain from bench to bedside. Although several of these initiatives started leveraging on one another, an operational coordination for strengthening the information flow and enhancing the exchange of experiences and learning across projects was lacking. Moreover, there was a clear need to evaluate the impact of the investment in this research area. Effective and efficient collaboration and coordination among the IMI projects in the area of neurodegeneration was a key success factor for the important public-private investment to achieve its full impact, so the need for a tailor-made and structured support structure was evident.
Why is it important for society?
Millions of people in Europe and worldwide live with neurodegenerative diseases that can severely impact their quality of life and wellbeing. NEURONET has brought together the IMI research projects targeting neurodegenerative diseases, effectively connecting resources and facilitating synergies and collaborations amongst them, with the aim of advancing science and knowledge in this important area and bringing solutions to European citizens.
What are the overall objectives?
NEURONET ‘s main objective has been setting up an efficient platform to boost synergy and collaboration across the IMI projects of the neurodegeneration portfolio, assisting in identifying gaps, multiplying its impact, enhancing its visibility and facilitating dovetailing with related initiatives in Europe and worldwide. The overarching concept has been to collect and analyse information and assets from the various neurodegeneration initiatives supported by IMI in order to accelerate the development and implementation of novel therapeutics in this area across Europe. This has been achieved by developing a platform that, on one hand, has allowed interactions between the actors of the IMI projects, and, on the other hand, has been assessing both the intellectual and technological contributions of various projects and their potential impact. NEURONET has also allowed to identify gaps and common issues across projects and it has also assisted in the building of future projects that will address these unmet needs using the context and the building-blocks provided by the projects and research.
The specific objectives of NEURONET have been:
1. To create an overall platform for efficient collaboration, communication and operational synergies among both present and future IMI neurodegeneration projects, including transparent procedures and setting up of governance mechanisms such as coordination boards, working groups and task forces.
2. To design systems to map and analyse information regarding actions, initiatives and partnerships in order to assess impact of the individual projects, remaining gaps and global value of the programme for stakeholders using consensus metrics.
3. To deeply analyse the existing IMI neurodegeneration projects to support management of the programme, providing an overview of timelines, dependencies, potential synergies and key results across projects.
4. To proactively detect needs, opportunities and transferrable best practices of projects, and connect them to enhance value of the portfolio, effectively turning it into an integrated programme.
5. To support projects by organising tools, services, expert advice and guidelines/recommendations (including innovative approaches and ‘best of breed’ solutions from existing projects) on common issues, including (without limitation) a particular focus on: Data sharing & re-use, HTA/regulatory interaction, Patient privacy & Ethics, Sustainability.
6. To support enhancement and coordination of communication across the IMI neurodegeneration projects, increasing programme visibility to the outside world, outreaching to key stakeholders and establishing synergistic relationships with major initiatives in the field worldwide.
7. To manage and to assess its sustainability.
WP1 Projects & impact analysis has been responsible for the collection and analysis of data/information regarding actions, initiatives and partnerships to assess impact of the individual IMI neurodegeneration (ND) projects remaining gaps and global value of the IMI ND programme for stakeholders.
WP2 Programme integration has made the governance and organisational structures of NEURONET (Scientific Coordination Board, Working groups, Task Forces) including the definition of associated workflows and procedures. WP2 has been in charge of detecting links and actionable items to enact specific synergies and collaborations (e.g. re-use of results) across projects, such as the EPAD-PHAGO collaboration and the NEURO Cohort.
WP3 Tools & services has designed and developed the NEURONET Knowledge Base (an online platform that provides a publicly accessible overview of the IMI ND programme, in addition to its outputs via the Asset Map) and the NEURONET Forum. Moreover, WP3 was also supporting projects by providing expert advice and guidelines/recommendations in 4 key areas of interest: Data sharing, HTA/regulatory interactions, Ethics & Data privacy and Sustainability.
WP4 Dissemination & outreach has been working to increase efficiency in communication efforts within the IMI ND portfolio and to raise the profile of the projects by enhancing visibility of results towards audiences worldwide through use of social media, event organisation, etc.
WP5 Management & sustainability has been providing both scientific coordination and project management support to all project components and activities and dealing with reporting, finances and legal issues.
NEURONET has developed the following tools/platforms for the ND portfolio:
1. NEURONET Knowledge Base (https://kb.imi-neuronet.org.)
2. NEURONET Forum (https://forum.imi-neuronet.org)
3. NEURONET Asset map
4. NEURONET Regulatory/HTA/payer interaction decision tool.
WP2 Programme integration has made the governance and organisational structures of NEURONET (Scientific Coordination Board, Working groups, Task Forces) including the definition of associated workflows and procedures. WP2 has been in charge of detecting links and actionable items to enact specific synergies and collaborations (e.g. re-use of results) across projects, such as the EPAD-PHAGO collaboration and the NEURO Cohort.
WP3 Tools & services has designed and developed the NEURONET Knowledge Base (an online platform that provides a publicly accessible overview of the IMI ND programme, in addition to its outputs via the Asset Map) and the NEURONET Forum. Moreover, WP3 was also supporting projects by providing expert advice and guidelines/recommendations in 4 key areas of interest: Data sharing, HTA/regulatory interactions, Ethics & Data privacy and Sustainability.
WP4 Dissemination & outreach has been working to increase efficiency in communication efforts within the IMI ND portfolio and to raise the profile of the projects by enhancing visibility of results towards audiences worldwide through use of social media, event organisation, etc.
WP5 Management & sustainability has been providing both scientific coordination and project management support to all project components and activities and dealing with reporting, finances and legal issues.
NEURONET has developed the following tools/platforms for the ND portfolio:
1. NEURONET Knowledge Base (https://kb.imi-neuronet.org.)
2. NEURONET Forum (https://forum.imi-neuronet.org)
3. NEURONET Asset map
4. NEURONET Regulatory/HTA/payer interaction decision tool.
NEURONET expected results and impact have included:
•To achieve effective and efficient coordination among ongoing and future projects in the IMI strategic area of neurodegeneration.
•To create structures that help create common direction, define problems and harness the power of projects towards jointly beneficial outcomes.
•To increase visibility of IMI’s significant public and private investment in the area of neurodegeneration; ensuring that the results of relevant IMI projects are developed optimally for the benefit of patients and health systems, including strategies for sustainability and uptake.
•To enhance impact of the individual projects by creating structural synergy and collaboration.
•To share common approaches/best practices across IMI projects and beyond.
•To seek and promote alignment and coordination on issues of common interest where several learnings are already available but disperse, such as sustainability, data sharing, biological tools and other materials, interaction with regulatory authorities and HTAs and ethical, legal and social implications of clinical neurodegenerative disease research.
•To develop a map of collaborative initiatives in neurodegeneration research, detecting gaps and promoting synergies.
•To create and support a network of neurodegenerative research-active sites in Europe, by potentially leveraging current online platforms for cohort discovery and data sharing.
•To achieve effective and efficient coordination among ongoing and future projects in the IMI strategic area of neurodegeneration.
•To create structures that help create common direction, define problems and harness the power of projects towards jointly beneficial outcomes.
•To increase visibility of IMI’s significant public and private investment in the area of neurodegeneration; ensuring that the results of relevant IMI projects are developed optimally for the benefit of patients and health systems, including strategies for sustainability and uptake.
•To enhance impact of the individual projects by creating structural synergy and collaboration.
•To share common approaches/best practices across IMI projects and beyond.
•To seek and promote alignment and coordination on issues of common interest where several learnings are already available but disperse, such as sustainability, data sharing, biological tools and other materials, interaction with regulatory authorities and HTAs and ethical, legal and social implications of clinical neurodegenerative disease research.
•To develop a map of collaborative initiatives in neurodegeneration research, detecting gaps and promoting synergies.
•To create and support a network of neurodegenerative research-active sites in Europe, by potentially leveraging current online platforms for cohort discovery and data sharing.