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Coordination Action in support of the sustainability and globalisation of the Joint Programming Initiative on Neurodegenerative Diseases

Periodic Reporting for period 5 - JPsustaiND (Coordination Action in support of the sustainability and globalisation of the Joint Programming Initiative on Neurodegenerative Diseases)

Reporting period: 2021-05-01 to 2021-10-31

The aim of JPsustaiND was to support the development, the extension and the sustainability of the capacities of the largest global collaboration on neurodegenerative disease (ND) research, the Joint Programming initiative for Neurodegenerative Disease research (JPND), allowing 30 countries to collaborate together to tackle the global challenge of ND. Since 2009 JPND has set up a common Strategic Research and Innovation Agenda (SRIA), and delivered an implementation plan that has permitted the mobilisation of approximately €100 million of additional funding between 2011 and 2015 to support transnational research programmes.
While progress has been pleasing to date, the implementation of JPND must now be scaled-up to further catalyse Member State commitments, and to formalise synergies between members and various partners. JPsustaiND thus aimed at setting the bases for a dedicated structure responsible for long-term JPND management and implementation, and extension of JPND membership to EU Member States and other countries and initiatives not yet participating.
To achieve this goal, the JPsustaiND partners, with the support of the JPND Management Board, implemented six work packages (WP), offering a stronger global dimension to JPND, by supporting further coordination of national research and innovation programmes in coherence with Horizon 2020 objectives and in the foresight of Horizon Europe, toward a dedicated European Research Area for brain health.
In WP1, a management and coordination framework was implemented for the project, in order to continuously orientate all activities towards the objectives, and to ensure their fulfillment within time plan and budget with 24 months extension at no costs.
The WP2 explored and presented possible scenarios for long-term sustainability and made a consultancy service document to prepare a business plan for an AISBL (a non profit international association under Belgium law) and to anticipate the possible legal status. In 2016, a mapping exercise delivered a Mapping Report and an interactive Research Database published in July 2018. Two regular calls for proposals were launched in 2021. A Knowledge hub implementation plan was proposed presenting a list of priority research topics and activities to be carried out by research groups in 2021.
WP3 initiated interactions with industry by setting up a workshop with private companies in October 2017 and a meeting with IMI2 in September 2018. The JPND’s Global Cohort Portal, identifying all cohorts of patients and controls around the world was launched in October 2017. This Portal is an ongoing resource that identifies nearly 200 longitudinal cohorts suitable for neurodegenerative disease research. The SRIA has been refreshed through meetings, workshops, questionnaires and an online stakeholder consultation. In depth work took place in three areas: Precision Medicine, Public Health and the use of non-human primates for ND research. The refreshed SRIA was released online in April 2019. A five-year Operating Plan was prepared to implement this updated SRIA. In 2021, JPND re-established contacts with Japan and EU-13 EU member states. An outreaching event programmed to take place during Spring 2020, was postponed due to COVID19 pandemic. A bibliometrics report of JPND scientific output performed by the Swedish Research Council was finalised and delivered during this period. In addition, the Implementation Plan 2020-2024 was adapted according to the needs arising from the COVID19 pandemic since spring 2020. In collaboration with the JPND Scientific Advisory Board, a call for Working Groups “Impact on COVID-19 on ND Research” was launched in 2021.
WP4 identified five distinct areas in which JPND is investing efforts and promoting (1) shared knowledge and best practices , (2) sharing of research strategies, (3) centralising and sharing data, (3) mapping the research and innovation landscape, (4) sharing infrastructures and (5) sharing experiences with Patient and Public involvement (PPI) in research. A thorough qualitative PPI evaluation was part of the Peer Review Panels, for the 2018, 2019 and 2021 calls. PPI has now an independent section on the JPND webpage and was active in several symposium and workshops. JPND has encouraged research calls applicants the use of 3 platforms of ESFRI, and also invited the 3 ESFRI platforms to a workshop on imaging, organised by JPND, that took place in December 2019.
WP5 continued to maintain a coordinated infrastructure for the active communication and dissemination of information on ND and research. Following the translation of selected sections of the JPND website in all 24 languages, there has been a significant boost in traffic to the site. WP5 continues to execute the advocacy plan targeting decision-makers at both the EU and national levels. In the last period, JPND published several dissemination articles in the online journal Open Access Government.
In WP6, a monitoring report was developed on the performance of JPND/JPsustaiND covering the period January 2015 to April 2017 by addressing the defined and recalibrated in 2016 input and output indicators and some outcome indicators. In April 2018 an online survey was performed to gain opinions from applicants 2016 and 2017 JPND calls in order to better calibrate JPND’s scientific and administrative call management to the needs of the research community. JPND also participated in the centralised impact assessment of transnational R&I projects of ERA-LEARN 2020. In 2019, WP6 performed a JPND self-evaluation and coordinated an JPND external evaluation. JPND external evaluation was finalised and the executive summary published on the JPND website in 2021. WP6 leader participated actively in a Task Force (TF) on Monitoring and Evaluation of the 10 JPIs.
JPsustaiND had three major levels of impact. Firstly, on the productivity of ND research by strengthening the alignment of the research effort and promoting a sustainable common vision on the research priorities at European level and its implementation supported by a common strategic research and innovation agenda shared by 30 countries. This has allowed an increase in the number of translational publications and discoveries, accelerating the identification of new treatments and solutions. Today JPND has achieved a position as the leading network for ND globally. Secondly, relying on the different stakeholders involved in ND research and on the patient organisations and general public, we prepared the field for an active patient and public involvement in ND research. Guidelines have been developed and implemented since 2015 as part of JPND’s annual calls and in the follow-up as a learning process. This PPI process that was implemented has been documented during the JPsutaiND period. Thirdly, JPsustaiND had an impact on the European Research Area by attracting the best research groups to work collaboratively, maximising the potential for high impact outputs. During this period, we worked on new partnerships with the European Commission, an ERANET cofund (JPcofuND2) and beyond neurodegenerative diseases with EBRA (European Brain Research Area CSA) together with EBC (European Brain Council) and toward other large European initiatives as ERA-NET Neuron and the Human Brain projects, with the final goal to launch a brain health partnership.