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Coordination Action in support of the implementation of a Joint Programming Initiative for Combating Neurodegenerative Diseases, in particular Alzheimer’s disease

Final Report Summary - JUMPAHEAD (Coordination Action in support of the implementation of a Joint Programming Initiative for Combating Neurodegenerative Diseases, in particular Alzheimer’s disease)

Executive Summary:
The JUMPAHEAD project was an FP7 coordination action that supported the implementation of JPND - the EU Joint Programme - Neurodegenerative Disease Research. It was a four-year project which began in 2010, funded by a two million euro FP7 grant (GA no. 260774). JPND aims to increase coordinated investment between participating countries in research aimed at finding causes, developing cures, and identifying appropriate ways to care for those with neurodegenerative diseases.

JPND was established as the pilot for “joint programming” – an unprecedented type of collaborative approach to research and a coordinating Management Board between the 23 JPND member countries was established in 2010. Since then, five additional countries have joined the initiative including Canada, bringing the total number to 28 countries, and making JPND the largest global research initiative aimed at tackling the challenge of neurodegenerative diseases.

JUMPAHEAD built the foundations for the JPND initiative by supporting the development and implementation of the JPND Strategic Research Agenda, launched on February 7th, 2012, as well as its dissemination and evaluation.

The outputs of JUMPAHEAD over its 48 month duration included innovative ways of pooling national expertise and resources and the establishment of closer and robust research collaborations among the participating states in the field of neurodegeneration research. More particularly, JUMPAHEAD facilitated:
• The commitment of up to 100 million euro of funding in the period of 2012-2015, which is in addition to funds already being spent by national funding organizations;
• The launch of a pan-European Research Strategy (SRA) to guide neurodegenerative disease research activity in Europe over the next ten years;
• Formation of an international Scientific Advisory Board composed of eighteen top-ranking scientists from academic research, industry and patient organisations from across the EU and beyond;
• Generation of common procedures for joint transnational calls for research proposals;
• Creation of a research mapping database available on the JPND website.

The implementation of the JPND Research Strategy has already begun with a phased approach of annual activities and action groups over the period of 2012-2014, under the direction of the JPND Management Board.

JUMPAHEAD contributed to the European Research Area by addressing the existing fragmentation of national research programmes, and improving co-ordination amongst research funders and research activities. By doing so, and through active communication and engagement with stakeholders and the wider public, it ensures the maximum benefit for all European citizens from our research efforts into neurodegenerative diseases.

Project Context and Objectives:
Neurodegenerative diseases such as Alzheimer’s and Parkinson’s are debilitating and largely untreatable conditions that are strongly linked with age. Amongst these disorders, the dementias are responsible for the greatest burden of disease, with Alzheimer’s disease and related disorders affecting over 7 million people in Europe, and this figure is expected to double every 20 years as the population ages. It currently costs approximately €130 billion per annum to care for people with dementia across Europe, highlighting age-related neurodegenerative disease as one of the leading medical and societal challenges faced by EU society.
The objective of the Coordination Action JUMPAHEAD was to support the implementation of the pilot Joint Programming Initiative on combating neurodegenerative diseases, in particular Alzheimer’s disease (JPND).

Although our understanding of the mechanisms of neurodegenerative disease has greatly improved over the past few years, there is no effective treatment able to stop or even slow down the deterioration of brain functions associated with these disorders. To tackle this pan-European health and societal challenge more effectively, 23 EU countries have launched the JPND (in September 2014, 28 countries are part of JPND). This is an innovative programme based on a common vision to improve the impact of their combined research effort to accelerate progress towards new treatments, identify preventative strategies, and improve patient care. The JPND is the first of the European Joint Programming initiatives which are designed to address the ‘grand challenges’ facing EU society in the coming years. These challenges are considered beyond the scope and resources of any one country to tackle.
JUMPAHEAD built the foundations for this initiative by supporting the development and implementation of a Strategic Research Agenda, as well as its dissemination and evaluation. This was achieved under the direction of the JPND Management Board.
The JUMPAHEAD coordination action was organized in 5 work packages (WP), and through the Work package 1 (WP1) provided the necessary administrative and logistical support to the meetings of the Management Board and the Scientific Advisory Board required for the development and implementation of the strategic research agenda.
The development and implementation of this agenda was undertaken by the WP2 and WP3.

The main objectives of JUMPAHEAD were therefore:
• the mapping of National and European research programmes
• the definition of strategic and scientific priorities that would benefit from coordination at the European level
• the definition of framework conditions to implement the SRA, i.e. political, legal, regulatory and financial arrangements
• the implementation of joint and coordinated research activities responsive to stakeholder interests
• the engagement of stakeholders through a communication plan to ensure the ultimate translation of research outputs into practice and policy
• the evaluation and monitoring of the joint activities.

Project Results:
The output of JUMPAHEAD over its 48 month duration included innovative ways of pooling national expertise and resources and the establishment of closer and robust research collaborations among the participating states in the field of neurodegeneration (ND) research. More particularly JUMPAHEAD allowed to commit up to 100 million € of funding in the period of 2012-2015, which is in addition to funds already being spent by national funding organizations. It launched a pan-European Research Strategy (SRA) to guide ND research activity in Europe over the next ten years, and formed an outstanding international Scientific Advisory Board (SAB) composed of eighteen top-ranking scientists from academic research, industry and patient organisations from across the EU and beyond. Finally JPND set common procedures for joint transnational calls (JTCs) and created a research mapping database available on the JPND website.
Indeed the research mapping exercise (WP2) was completed early 2012. Total funding data collected amounted to an overall investment beyond €1.6bn. A report is publicly available via the JPND website. Research priorities addressing the required areas and considerations were identified across the whole spectrum of research activity with the help of the SAB, additional academic experts and other stakeholder groups. Prioritisation was achieved through three domain specific academic workshops, involving 100 scientific opinion leaders, plus stakeholder workshops with industry and patient and carer groups. An ‘integrating’ workshop was held at the end of this process in order to assemble a balanced list of future priorities. The JPND SRA was launched on 7th February 2012.

Further to the publication of the SRA, and through WP3, all funding organisations were asked to prioritise SRA topics in a survey. Four working groups according to the broad scientific themes identified by the SRA developed a list of opportunities. Based on their report, a “JPND SRA Implementation Plan, Phase 1” was delivered, including concrete suggestions for implementation. Seven suggestions for JTCs were formulated. In addition, eight task forces were formed for topics that still required further work and whose output would lead to further concrete activities at a later point.
Six JTCs were launched since 2011, more details are available on the JPND website. Between 14 and 23 countries participated in each call. In total, 30 collaborations were funded including 242 research groups, with a total budget of 63 Mio €. The first collaborations started in 2012. Also the collaboration with the Centres of Excellence in Neurodegeneration (COEN) resulted in two calls that were published from COEN under the umbrella of JPND. A seventh call on longitudinal cohorts studies was launched in 2014 and resulted in 10 funded proposals.
Regarding communication (WP4), a brand was developed for JPND, including material for dissemination. The public website www.jpnd.eu went live in 2010. The benefits of participation in JPND have been communicated and disseminated to both internal and external audience, and JPND has engaged in strategic relationship-building with key stakeholders. A JPND Stakeholder Engagement Plan was delivered in May 2013 and is currently being executed.

Finally, JPND (through WP5) developed indicators of success as part of its Framework for monitoring and evaluation and monitored whether these indicators were met during the lifetime of both JPND and JUMPAHEAD. A logical framework was developed and includes 17 type A indicators (overall process of joint programming) and 20 Type B indicators (scientific and societal objectives of JPND).
Measurements of the indicators of success were performed, as well as a survey analyzing the attitudes of member states to the JPND. The report is available ion the JPDN website. Finally, a review of JPND progress by an independent committee of three high level experts was held in Brussels in September 2013.

Potential Impact:
The output of JUMPAHEAD included innovative ways of pooling national expertise and resources and the establishment of closer and robust research collaborations among the participating States in the field of neuro-degeneration research. JUMPAHEAD contributes to the European Research Area by addressing fragmentation and improving integration of national research programmes to offer a competitive and attractive image of European research prosecuted for the greatest benefit of Europe’s populations and economies.
The goals of the European-wide strategy are;
• To develop new treatments and preventive strategies
• To improve health and social care approaches
• To raise awareness and de-stigmatise Alzheimer’s and other Neurodegenerative disorders
• To alleviate the economic and social burden of these diseases

JPND is working to implement these goals through;
• building capacity in excellent basic, clinical and healthcare/social research
• coordinating and aligning European and national research activities
• translating research evidence into clinical, social and public health practice
• partnering with industry, patient, carer and health service stakeholders, and decision makers.
Identified JPND priorities will be addressed within the next ten years through a range of long-term, medium-to-large-scale, programmatic initiatives. In order to implement and deliver its strategy, JPND is recognising the importance of engagement and partnership with industry, patient and carer organisations, research funding agencies and the European Commission. Working Groups are classifying priorities according to scale, impact, and agreed timelines, and it is expected that the first of the implementation initiatives have emerged since 2012.

List of Websites:
www.jpnd.eu
General enquiries:
secretariat@jpnd.eu

For Media Enquiries:

Dr. Derick Mitchell
dmitchell@jpnd.eu
+353-1-442-9015