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Commission proposal for a Council Recommendation on a pilot joint programming initiative to combat neurodegenerative diseases, in particular Alzheimer's - briefing

23 July 2009
by eub2 -- last modified 23 July 2009

Today, the European Commission adopted concrete proposals to tackle Alzheimer’s disease, dementias and other neurodegenerative conditions. These shared health and social challenges in Europe call for coordinated actions to ensure efficient prevention, diagnosis, treatment and care for those affected. In addition, European countries are also invited to pool their resources and better coordinate their research efforts in the field of neurodegenerative diseases, and Alzheimer’s in particular, by programming their research investments jointly for the first time, instead of each separately. There are currently over seven million people with Alzheimer's disease and related disorders in Europe and it is predicted that this number will double in the next 20 years. It is vital to plan, invest and cooperate in this field today both to control the social costs of these diseases as well as to offer hope, dignity and healthier lives to the millions of sufferers and their families. Today's actions mark important new steps both in the Commission's 'Europe for Patients campaign' and the new approach of Joint Programming in research.


1. Why is the European Commission proposing for a Council recommendation on a pilot Joint Programming initiative on Neurodegenerative diseases, in particular Alzheimer's?

During the French Presidency in 2008, neurodegenerative diseases and Alzheimer's in particular, were identified by Member States as an area where social demand is high and where a common initiative, using Joint Programming (JP), would offer major added value compared with the current, fragmented efforts in the European Research Area. The Competitiveness Council in December 2008 invited the Commission to submit a proposal for a Council Recommendation to prepare the launch of this pilot Joint Programming initiative in 2009.

The proposed Recommendation is expected to be adopted by the Council in the course of the autumn.

2. What is exactly Joint Programming?

Joint Programming in research is a new approach proposed by the Commission in 2008 to tackle major societal challenges such as climate change, energy supply, or big diseases.

European countries choosing to participate in a Joint Programming initiative will pool resources together and coordinate their efforts to increase the efficiency of public research funding and avoid duplication of efforts. Indeed, 85% of European public research funding is currently invested in activities and programmes conceived, developed and implemented nationally without any transnational coordination, while the problems we face are of a European, and even global, scale.

Joint Programming is a flexible process, where European countries participate voluntarily and on a variable geometry basis. It includes:

* the development of a shared vision on how research cooperation and coordination at European level can contribute to tackle a major challenge
* the drafting of a Strategic Research Agenda (SRA) establishing medium to long term research needs and objectives
* the drafting of an effective implementation plan of this SRA with priorities, milestones and timelines, to give a joint response to a shared challenge

This new Joint Programming approach is a 'product' of the Ljubljana Process launched in May 2008 by the Council, which endeavours to develop a common European vision for the European Research Area and to improve its governance. Joint Programming can change the way in which we think about and do research in Europe.

3. Why a pilot Joint Programming initiative for neurodegenerative diseases, in particular Alzheimer's?

Today in Europe over 7 million people suffer from Alzheimer's disease and related disorders and this figure is expected to double by 2020 as the European population ages. According to the World Health Organisation, Alzheimer's disease is the fourth common cause of burden of disease in the EU. This places a heavy burden of the patients' relatives but also on the society as a whole: the total direct and informal care costs of Alzheimer's and related disorders in 2005 amounted to EUR 130 billion in the EU, 56% of which were informal care. With the rise in life expectancy in Europe, the number of persons affected by Alzheimer's and related disorders will increase dramatically.

Although our understanding of the mechanisms of the disease has greatly improved over the past few years, there is at present no effective treatment able to slow down or stop the deterioration of brain function.

Significant amounts of financial and human resources for research in this field are being mobilised by EU countries. But the problem cannot be tackled through the isolated effort of national research programme and the coordination of national efforts at European level is hampered by: the barriers between disciplines and fields of research, and the compartmentalisation of research activities; the lack of linkages between basic, clinical and public health, and social research: only some of the existing or acquired basic knowledge feeds into current clinical practice and care organisation and delivery; the way these activities are run, mainly in a national context, reinforcing fragmentation and limiting the sharing of best practices

These are the reasons why EU countries have identified neurodegenerative diseases, and in particular Alzheimer's, as an area where a pilot Joint Programming initiative should be launched. Pooling and coordinating the efforts of European fundamental, clinical and social researchers in this field will increase Europe's chance to better understand, detect, prevent and combat the basic mechanisms that trigger neurodegenerative diseases and to improve care service for people suffering from them. In turn, it would lead to mitigate the financial burden caused by such a large population suffering from this disease.

4. How will Joint Programming in the area of neurodegenerative diseases work concretely?

Countries willing to participate in the pilot Joint Programming initiative will work towards developing a shared vision of research coordination in the field of neurodegenerative diseases and establishing a Strategic Research Agenda (SRA) with an implementation plan.

Actions to be undertaken within the Joint Programming framework may include:

* exchanging information on national programmes, research activities and health care systems
* identifying areas which could benefit from coordination
* issuing joint calls for proposal
* pooling of resources
* facilitating transdisciplinarity and cross-sectoral mobility and training
* exploring the joint exploitation of research infrastructures
* networking of research centres.

5. How many countries will be involved in this pilot Joint Programming initiative?

In December 2008, 10 Members States (FR, UK, IE, IT, SE, DK, ES, NL, CZ, FI) and 1 associated country to the EU's 7 th Research Framework Programme (Switzerland) have signed a Declaration of Intent showing their willingness to tackle the challenge of neurodegenerative diseases, in particular Alzheimer's, through Joint Programming.

This Declaration of Intent sets the basis for a potential shared vision in this field, outlines the possible research fields of particular added value and describes a possible management structure.

Since then, other countries have also shown their interest and representatives from 20 countries (BE, CH, CZ, DE, DK, ES, FI, FR, GR, IE, IT, LU, NL, PL, PT, RO, SE, SK, TR, UK) are currently involved in the setting up of a management structure for implementing this Joint Programming initiative.

More countries will be able to join the initiative later, in accordance with the participation rules of Joint Programming.

6. What will be the role of the European Commission for this initiative?

The Commission will mainly act as a facilitator and coordinator of activities

Together with Member States, it will explore possible Commission initiatives to assist MS in developing and implementing the common research agenda.

The Commission can also take other initiatives to promote JP in this area, such as providing "ad-hoc" and complementary measures to support such a pilot JP initiative.

These measures could include:

* the support to the management structure (especially to its main activities – development of a shared vision and establishment of the Strategic Research Agenda (SRA) on combating neurodegenerative diseases)
* the provision of data, information and analysis on the state of art in this field in Member States and at European level
* looking into possible forms of consultation and cooperation on this subject with scientifically-advanced groupings at international level.

The Commission will also contribute to the implementation of this initiative using the existing financial instruments such as the Framework Programme for Research.

7. Is there a Community budget planned for this initiative?

No. Joint Programming is about interested countries defining common strategies and putting together national resources to tackle a common challenge. By definition, the pilot Joint Programming initiative on neurodegenerative diseases will be mainly funded by participating countries.,

However, as stated above, the complementary use of Community funding is not excluded.

8. Is it planned to establish a management structure for this Joint Programming initiative?

A Joint Programming initiative cannot work properly without a specific management structure, as the novelty of the approach resides much more in joint decision-making than in later joint implementation.

The structure currently envisaged comprises:

* A Management board, composed of representatives of the participating countries, which will be the decision making body;
* A Scientific board, composed of high level researchers specialized in neurodegenerative diseases, in particular Alzheimer's disease;
* An executive office/secretariat, which will translate the decisions of the Management board into concrete actions.

The set up of the management structure by the participating countries has become effective. The Management Board convened for the first time on 18 June 2009.

9. What are the current actions in EU countries to fight neurodegenerative diseases?

Alzheimer's and related disorders are becoming one of the emerging research priorities in many European countries.

Several of them have adopted or are in the process of adopting national plans in this field such as France, UK, Germany, Ireland, Sweden, the Netherlands, Spain and Norway.

10. Do EU funding research programmes support research to fight neurodegenerative diseases?

Research on neurodegenerative diseases, in particular Alzheimer's, has benefited from growing attention at European level.

* In the 6 th EU Framework Programme for Science and Research (FP6, 2002-2006), EUR 136 million were devoted to the support of 28 collaborative projects in this area. Of this, EUR 40 million specifically tackled a translational approach to the study of Alzheimer's disease
* FP6 also provided a means of coordinating national research activities through ERA-Net projects which foster networking and coordination of research activities conducted at national or regional level. For example, the ERA-Net project NEURON involving 12 Member States focuses in the area of neurodegenerative diseases with the aim of sharing information, identifying needs and devising joint initiatives. Its first joint call for proposals was issued in January 2008.
* Through the 7 th Framework Programme (FP7, 2007-2013), the Commission has further reinforced efforts in the area of neurodegenerative diseases. Currently 1/3 of the available funds in the area of brain research for the period 2008-2009 were allocated to neurodegenerative research. 24 collaborative research projects for a value of EUR 94 million are being supported in this field, of which EUR 24 million are devoted to Alzheimer's disease and related disorders. A further EUR 8 million are dedicated to collaborative research focusing on various aspects of the organisation, provision and quality of long term care of the elderly in Europe.

More European support will most probably be provided to research in the field of neurodegenerative diseases in future calls for proposals under FP7.

EU actions have also been launched under the Public health Programme (2003-2008) whose actions are listed in the Commission Communication on a European Initiative on Alzheimer's disease and other dementias.

11. Will there be other Joint Programming initiatives in other research fields?

The Commission is encouraging Member States to define other areas of research on big challenges where Joint Programming could have an added value. In December 2008, the Competitiveness Council announced that more initiatives would be prepared

As a consequence, the Council created a High Level Group on Joint Programming which will be responsible for identifying themes for potential joint programming initiatives.

This Group consists of senior officials from EU countries and the Commission. Countries associated to FP7 may also participate in the Group as observers.

It held its constitutive meeting on 13 February 2009 and is expected to identify and substantiate, following broad public consultations, a first list with a few Joint Programming themes, in time for the Council to adopt the initiatives before the end of 2010.

Source: European Commission

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