EU Action on Dementia
24 Member States are now participating in the Joint Programming Initiative, which was launched in July 2009.
Joint Programming addresses EU countries willing to engage in the development of a common Strategic Research Agenda. The first-ever Joint Programming Initiative focuses on Neurodegenerative diseases, including Alzheimer's disease and was launched in 2009. Member States were invited to participate, on a voluntary basis. Initially 11 Member States joined and this has increased steadily to a current level of participation of 24 Member States including (Albania, Belgium, Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Ireland, Italy, Luxembourg, the Netherlands, Norway, Poland, Portugal, Slovak Republic, Slovenia, Spain, Sweden, Switzerland, Turkey and the United Kingdom). The Management Board meets at least three times a year and is chaired by Professor Philippe Amouyel. This pilot Joint Programming initiative should pave the way for other Joint Programming initiatives in the future.
EU Science and Research Commission, Janez Potocnik, said: "We want to help research play a bigger role in tackling such societal challenges as Alzheimer's and related disorders. The Commission already has a track record of supporting European research projects with the best scientists in this area. But we will see a major step ahead if Member States now start coordinating their national programmes around a common agenda. With the Recommendation on Joint Programming of research we propose today, we invite Member States to commit to a pragmatic approach for pooling resources and research investments in order to better address Alzheimer's and other neurodegenerative diseases. This is an opportunity for European science and a response to a challenge of our modern society."
There is a website dedicated to the Joint Programming at http://www.neurodegenerationresearch.eu.
The EU’s Joint Programming Initiative on Neurogeneratve diseases, including Alzheimer’s disease, was launched in 2009 and now includes some 24 Member States. In this article, Alzheimer Europe speaks with Professor Philippe Amouyel, Chair of the Management Board of the pilot Joint Programming Initiative (April 2010)
Alzheimer Europe (AE): Professor Amouyel, you are leading the Joint Programming Initiative on combating neurodegenerative diseases in particular Alzheimer’s disease. Could you explain how this initiative was developed and what the aims of the initiative are?
Philippe Amouyel (PA):Today in Europe, only about 5% of the total public funding of research is common to European countries through the 7 th Framework Programme for Research and Technological Development, and about 10% to support intergovernmental schemes or organisations. Conversely, 85% of research budgets are spent on national programmes exclusively. When we compare this to the US, despite the competences and skills distributed all over Europe and the high quality research being performed, European research is perceived to be especially fragmented and less efficient. One research field, which is amongst the most affected not only by a poor level of investment but also by, the high degree of fragmentation and lack of coordination , is dementia and Alzheimer’s disease .
To provide a method allowing to reduce these limitations, a Communication to the European Parliament, the Council, the European Economic and Social Committee and the Committee of Regions was published in July 2009 by the European Commission introducing a new concept of collaboration among owners of national research programmes: this is joint programming. It can be defined as "a process in which Member States define a common vision and a strategic research agenda, in order to address a major societal challenge for which the scale and the scope of their national programmes alone may not reach adequate proportions”. Participation of Member States and Framework Programme Associated Countries in such a process is carried out "on a voluntary basis and according to the principles of variable geometry and open access".
This Communication was published just after France assumed the Presidency of the European Union for 6 months. Almost simultaneously, the President of the French Republic, Nicolas Sarkozy, had decided to make the fight against Alzheimer’s disease and related disorder a national priority, through a global mobilisation of medical, social and research forces. The French Minister of Research and Higher Education, Mrs Valérie Pécresse took the opportunity of this announcement to set up a working group, which she personally headed, entitled “The Health Challenge of an Ageing European Population: Fighting Degeneration” in Versailles during the informal Competitiveness Council organised in Versailles, 17th July 2008.
This working group agreed on the urgency to act in an ageing Europe upon the challenge due to the explosion of neurodegenerative diseases, and it recommended that the Member States under the Competitiveness Council, would launch a joint programme of research on these diseases, combining socio-economic and medico-biological issues.
Joint programming is neither another programme, nor any new tool to add to the extensive tool box of the existing national, intergovernmental or Framework Programmes. The focus of Joint Programming is not on spending the money, but about assigning the money. In a programming cycle, implementation follows and results from strategic steps which include horizon scanning, scenarios and impact assessments, budget arbitrations, prioritisation, evaluations, criteria and indicator setting. Joint Programming intends to cover those steps but in a specific configuration of countries willing to go together for the same ambitious objective.
AE: Member States can decide on a voluntary basis whether they take part in a Joint Programming Initiative. Could you let us know which countries will be taking part in this initiative?
PA: Not only Member States can decide on a voluntary basis whether they take part in a Joint Programming Initiative. Given the importance of the theme in Europe, we immediately open this initiative to all the Member States and associated members of the Programme Committee of the Health thematic priority of the 7th Framework Programme. At the very beginning we were 11 countries that prepared and approved a declaration of intent in November 2008. Today 24 countries are participating including: Albania, Belgium, Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Ireland, Italy, Luxemburg, the Netherlands, Norway, Poland, Portugal, Slovak Republic, Slovenia, Spain, Sweden, Switzerland, Turkey, United Kingdom.
A management structure, the Management Board, has been established that meets since 18th June, 2009 at least three times a year. A Chair headed by France, assisted by a Vice-Chair headed by Sweden, coordinates the work plan of this initiative. An executive board, including Germany, the Netherlands and Italy, meets every month to implement the work plan. An international scientific advisory board composed of fifteen top-ranking scientists from all over the world equally distributed within the three main challenges, i.e. basic research, clinical research and social and health care research has been nominated. This scientific advisory board will meet next spring and will be in charge to propose scientific priorities in order to allow the Management Board to build up the scientific research agenda.
AE : What will be the key challenges that you believe the Joint Programming Initiative should address?
PA: The ultimate goal is obviously to find a cure of the disease and to enable early diagnosis for early, targeted treatments. However, the time necessary to reach this goal is not predictable. In the meantime, it is essential to implement solutions that can alleviate, even partially, the plight of families and the economic burden brought about by the increasing prevalence of this disease in our ageing populations. All these elements constitute the bases of a shared vision on which a scientific research agenda will have to be built. This scientific research agenda must address three main challenges.
The first challenge is scientific. Although our understanding of the mechanisms of the disease has greatly improved over the past few years, we are far from the full picture and there is no immediate prospect of finding therapies that may be effective in slowing or halting disease progression. For instance, researches on genetic susceptibility , competitive animal models or new biomarkers must be supported.
The second challenge is medical. The general practitioners, specialists, and other caregivers have at their disposal batteries of tests, from simple to more complex, to clinically explore brain function and help establish a diagnosis. However, the organisation of the care system at all stages of the disease needs further consideration. How is the relationship best managed between those involved in diagnosis, symptom management and social care as the disease progresses from a medical problem into a medical and social problem? What therapeutic strategies (both drug and non-drug) have demonstrated effectiveness in appropriate randomised studies? Do we have clinically meaningful endpoints, for example, is effectiveness judged according to the comfort of the sick, of those who live with her or him, or on the judgement of the evolution of the disease, or even on a recovery which is for now so far out of reach?
The third challenge concerns social care and health services. An environment must be created around the patient and his/her family, which adapts to the evolution of abnormal behaviour in everyday life. For instance, home automation, smart homes, domotics must be developed. Simple adaptions to the environment and support for caregivers at the onset of illness requires a continual gradual increase of energy and skills. At what stage should one consider leaving their home for life sites? And how would these structures be organised with enough trained and valued staff, able to deal with conditions of varying severity?
A work plan has been prepared among the participants. This work plan is organised around five work packages with work package leaders from all over Europe: management and coordination (France), development of the strategic research agenda (UK and Italy), implementation of this strategic research agenda (Germany and Turkey), communication and dissemination (Ireland), framework for monitoring and evaluation of the pilot initiative (the Netherlands). Finally, the essential objective of this action is to promote new initiatives around research excellence intended to offer a competitive and attractive image of European research carried out for the greatest benefit of Europe’s populations and economies.
AE: The current 7 th Framework Programme supports research in the field of Alzheimer’s disease and the European Commission has also launched a European Alzheimer’s Initiative to address some of the public health questions posed by Alzheimer’s disease. How will the Joint Programming Initiative collaborate with these other European programmes?
PA: Indeed several funding programmes do exist in Europe at a national and international level. A strong willingness exists to coordinate similar programmes aimed at transnational European added value while not undermining existing opportunities and avoiding unnecessary duplication with national programmes.
Eighty five percents of public research budgets of European countries are fully controlled at a national level, with probably less than 1% of the amount being reoriented to collaboration or coordination between countries. As a consequence, individual national research programmes may unnecessarily duplicate each other from an international perspective. Although a limited experience with transnational calls for proposals is available from e.g. Nordic or German-speaking countries, as well as within the ERA-NET scheme, the diversity and complexity of national procedures largely preclude the setting up of cross-border programmes and discourage researchers from accessing research funding across borders.
Thus no real collaborative European endeavour is easily conceivable to tackle a societal challenge on the scale at which neurodegenerative progression and the development of dementia and Alzheimer’s disease is taking place. Increasingly the imperative is emerging of the need to encourage a fraction of those budgets be spent on common objectives, but in a reasonably integrated way between countries willing to share risks and benefits on a much larger scale.
In addition to the Joint Programming Research initiative managed by voluntary countries themselves, the Commission has launched in the Work Plan 2010 for the implementation of the Second Health Programme a Joint Action specifically on Alzheimer's disease and other dementias. The objective of this action are: to support the improvement of collection of better epidemiological data on dementias in Member States, to analyse existing early detection tools for cognitive decline at European and national level in order to define best practices recommendations and to establish a platform to assess existing practices on rights and to preserve autonomy of persons suffering from dementias. The promotion of the dementia dimension in health determinants actions at EU level in order to define a healthy brain lifestyle set of recommendations is also considered. According to the topics retained, this action would strongly benefit of taking into account the conclusions of the EuroCoDe (European Collaboration on Dementia ) Project coordinated by Alzheimer Europe. This joint action is under progress and France is acting as a coordinator. As Chair of the Joint Programming initiative, I am fully informed of this Joint Action and had the chance to exchange in depth with the French organisation HAS (Haute Autorité de Santé) responsible for the preparation of the Joint Action. A specific work package dealing with the coordination with the Joint Programming initiative is planned.
AE: As head of the National Scientific Foundation for Alzheimer’s disease and related disorders in France, you have of course experience in supporting research on a national level. What would you consider as the key achievements and successes of this Foundation since its establishment in 2008?
PA: With an estimated total number of 850 000 cases over 75 years in France and 1 out of 5 deaths, Alzheimer’s disease and related disorders fully met objective criteria for health priorities. To go beyond statistics, over 100 experts from all fields, managed by Professor Joël Ménard, an outstanding physician and scientist fully aware of public health challenges, met for 3 months at the end of 2007 to propose actions against this threat. Research was at the heart of their discussions. Following the report of these experts, the President of the French Republic, Nicolas Sarkozy, decided to launch, on February, 1st 2008, a five-year national plan on Alzheimer’s and related diseases with three major keywords: improve the quality of life of patients and their families, understand to be able to act, mobilise for a societal challenge. This second keyword is fully devoted to research and underlies specific orientations: reinforce the strengths, attract new teams in the field, support young researchers, reinforce the best clinical centers, increase interaction with pharmaceutical industries and biotech companies.
To secure and speed up the implementation of this scientific policy a National Foundation on Alzheimer’s disease and related disorders was created in June 2008. This non-profitable private foundation ensures today an efficient and highly reactive programming of research in the field of Alzheimer’s disease and related disorders in France. The Foundation launches calls for proposals according to the priorities identified and inter-connects multiple other funding sources (ANR, PHRC, Inserm, CNRS, CNSA, Universities, European funds…). It also encourages public-private partnerships, reinforces productive teams and attracts new skills. For instance, during the first two years, several specific calls for proposals have been launched, two on experimental models, two on human and social sciences, one on the creation of a National Center for Imaging.… Several large structural projects have been founded, the follow-up of the large prospective study, the Three Cities study and a European GWAS collecting more than 20 000 samples including 6 000 cases of Alzheimer’s disease. This last work allowed discovering two new genetic susceptibility factors for Alzheimer’s disease. The Foundation participates actively in the European pilot Joint Programming Initiative, and in a French-Canadian collaborative action. This large cooperation of researchers from all domains, from all countries and from both the academic and the private fields, is the only way to accelerate significantly the provision of solutions to fight efficiently these terrible diseases.
Last Updated: vendredi 14 novembre 2014