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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 4 - JPsustaiND (Coordination Action in support of the sustainability and globalisation of the Joint Programming Initiative on Neurodegenerative Diseases)

Reporting period: 2019-11-01 to 2021-04-30

The overall aim of JPsustaiND is to support the development and extension of the capacities of the EU Joint Programming Initiative on Neurodegenerative Diseases, in particular Alzheimer's (JPND). Since 2009 JPND has been operating on a very light management structure based on a simple Terms of Reference. Through this JPND has been able to set a common Strategic Research Agenda, and to deliver its first implementation plan that has allowed among other achievements, the mobilisation of approximately €100 million of additional funding between 2011 and 2015 to support transnational research programs. While progress has been pleasing to date, the implementation of JPND must now be scaled-up to further catalyse Member State commitments, and to formalize synergies between members and various partners. The immediate challenge therefore for JPND is to secure its long-term sustainability by Member States, to mobilize those which are not yet participating, and to increase its impact at the national level and globally. JPsustaiND thus aims at creating the 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, will implement the following six workpackages: Coordination and Management; Long Term Sustainability; Capacity Extension; Alignment and Outreach; Communication and Advocacy; and Monitoring, Evaluation and Impact Assessment. JPsustaiND will implement a stronger global dimension of the JPND, and will avoid duplication of research and infrastructure investment at the national level. By supporting further coordination and integration of national research and innovation programmes with the JPND research strategy, in coherence with Horizon 2020 objectives, JPsustaiND is thus creating a dedicated European Research Area for neurodegenerative diseases.
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. The project obtained 24 months extension at no cost (18 months in July 2019 and 6 month extension due to the COVID-19 in January 2021).
WP2 explored and presented possible scenarios for long-term sustainability with a dedicated implementation structure. In addition, the Implementation Plan 2020-2024 was adapted according to the needs arising from the Corona pandemic since spring 2020. In collaboration with the JPND Scientific Advisory Board, a number of topics for ND research related to COVID-19 were identified. A Knowledge hub implementation plan was submitted presenting a list of priority research topics and activities to be carried out by research groups.
In WP3, JPND has fostered the engagement of the research community with regular, targeted calls for research proposals, developed on the basis of advice from expert action groups. JPND developed mutually beneficial collaboration with Patients and Patients Organisations. JPND is reaching out globally to countries not currently participating in JPND, in particular to the EU-13 countries, Japan, and USA.
In WP4 commitment and efforts were made to fulfill the Patient and Public Involvement (PPI) in research across several themes and enabling activities. A thorough qualitative PPI evaluation was part of the Peer Review Panels, for the 2018, 2019 and 2020 calls. PPI has now an independent section on the JPND webpage. At the JPND/JPcofuND Symposium, in November 2019, two workshops took place on PPI in JPND Research Calls for proposals. A PPI workshop has been organised to take place during the Dementia Forum 2021. JPND has encouraged research calls applicants the use of 3 platforms of ESFRI indicating that in the call texts, and also invited the 3 ESFRI platforms to a workshop on imaging, organised by JPND, that took place in December 2019.
In WP5, JPND enhanced the visibility of its engagement in PPI in research with the creation and publication of a PPI page on the JPND website. JPND also communicated and disseminated news on its participation in the PPI Workshop at the World Dementia Forum that takes place on May 27th 2021.
In WP6, the JPND external evaluation was finalized and the executive summary published on the JPND website. To follow-up on the recommendation of JPND evaluation, a discussion paper on JPND monitoring procedure was developed and discussed in the JPND Management Board with a result that a JPND procedure document will be developed. Furthermore, in January 2020 WP6 leader participated in an ERA-LEARN workshop on monitoring and evaluation (M&E) of P2Ps and presented the JPND M&E approach. The WP leader also participated as elected vice chair and contributed to several meetings of Task Force (TF) on monitoring and evaluation of the 10 JPIs to follow-up on the exchange of experiences about implementation of KPI in the respective JPI’s.
Impact on the productivity of Neurodegenerative Disease Research: The first expected impact on this theme is a more rational alignment of the research effort on ND through sustaining a common vision on the research priorities at European level and its implementation via existing and new instruments and actions. The coordination of research priorities as well as the linkage and promotion of supportive research infrastructures (e.g. technologies, bioresources, datasets) will directly impact the Health theme by providing a framework that will attract the best research groups to work cooperatively and collaboratively, maximising the potential for high impact outputs. The implementation of the SRA should also improve the integration of disciplines and fields of research by developing linkages between basic, clinical and public health and social research. The third expected impact is the pooling and increased coordination of national resources and efforts to reach the critical mass necessary to better understand, detect, prevent and combat basic mechanisms that trigger ND and to improve care services for people and carers living with these diseases As an overall impact an increase in the efficiency and productivity of research and innovation within neurodegenerative diseases is to be expected within the European Research Area that will prompt revision of the SRA in response to the new developments.