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

Reporting period: 2018-11-01 to 2019-10-31

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 an 18 months extension at no cost of the project. WP2 explored and presented possible scenarios for long-term sustainability with a dedicated implementation structure. In addition, the Implementation Plan 2020-2024 was developed and put in place. In WP3, JPND continues to foster the engagement of the research community with regular, targeted calls for proposals, developed on the basis of advice from expert action groups. In addition, JPND will continue to develop and grow, through both the establishment of mutually beneficial collaboration with industrial partners and international organisations. JPND is reaching out globally to countries not currently participating in JPND. A range of approaches has been used, including connection through established contacts, surveys and targeted interviews. Interaction with industry has included a workshop with companies in October 2017 and a meeting with IMI2 in September 2018. JPND’s Global Cohort Portal was launched in October 2017 with number of cohorts expanded in 2018. The Portal is an ongoing resource that identifies nearly 200 longitudinal cohorts suitable for neurodegenerative disease research. The 2016 mapping exercise delivered a Mapping Report and an interactive Research Database in July 2018. The Strategic Research and Innovation Agenda (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. WP4 is committed to invest efforts towards fulfilling 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 both 2018 and 2019 calls, with an improved process in 2019. At the upcoming JPND Symposium, in November 2019, two workshops will take place on PPI in JPND Research Calls for proposals. Based on the feedback from the panel of the workshops an improved procedure to evaluate PPI in JPND Calls will be delineated in mid 2020. In its efforts towards alignment, JPND has encouraged research calls applicants the use of 3 platforms of ESFRI indicating that in the call texts. WP5 continues to execute the advocacy plan targeting decision- and policy-makers at both the EU and the national levels. Period 3 saw JPND engaging policy makers of the EU-13 nations in Brussels over a breakfast meeting, as well as in Dubrovnik. JPND also conducted a few interviews with representatives of the EU-13 states (members and non-members) to find out more on how to customise its programmes to enhance engagement with these countries. JPND’s website was revamped during this period to increase stakeholder engagement.
The WP6 performed a JPND self-evaluation and coordinated an JPND external evaluation. In the self-evaluation JPND’s progress was assessed against the developed sets of monitoring indicators over the 40-month period of JPsustaiND. Recommendations were formulated to enhance the impact and reach of JPND going forward. An external evaluation committee composed of four international experts provided an independent review of JPND’s performance to date, taking into account whether the programme has been conducted according to the JPsustaiND Grant Agreement, and provided recommendations for improvement. Furthermore, end 2018 a web-version of a survey report focused on the experiences of the project coordinators and project partners regarding the call procedure and the evaluation criteria of the 2016 and 2017 calls, as well as views and preferences for future JPND calls was developed and published on the JPND website.
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.