JOINT PROGRAMMING

“Alzheimer’s”, a pilot initiative

20 European countries and the European Commission agreed to fight neurodegenerative diseases together by coordinating their research programmes around common objectives.

Brain imaging shows, on the left, the hippocampus of a healthy subject and, on the right, that of a patient with Alzheimer’s disease. With software imaging developed by researchers, radiologists can access all of the hippocampus, represented in red on the cross-section. This brain structure plays a fundamental role for memory and is affected in the first stages of the disease. CNRS Photothèque/Erwan Amice
Brain imaging shows, on the left, the hippocampus of a healthy subject and, on the right, that of a patient with Alzheimer’s disease. With software imaging developed by researchers, radiologists can access all of the hippocampus, represented in red on the cross-section. This brain structure plays a fundamental role for memory and is affected in the first stages of the disease. CNRS Photothèque/Erwan Amice

It discretely settles in the vagaries of the mind of one out of 20 people over the age of 65. Little by little, it takes hold of one’s memories, the most recent first – and sometimes even the memories of loved ones faces – it spreads like an oil spill in the ocean, and destroys everything in its path. Memory, attention, language, behaviour and mood problems - it operates in all areas and is at the centre of the deterioration of its victim’s condition, progressively denying them their independence. “It” is dementia, an illness affecting 7.3 million Europeans, a number that, with the aging of the population, could double by 2020 according to epidemiologist’s estimations. In terms of health care, dementia already costs the EU around €120 million. Thus there is interest to increase research efforts in the field, particularly for Alzheimer’s disease which counts for close to 70% of dementia cases.

Collaboration, coordination…

The problem of increasing prevalence of neurodegenerative illnesses associated with the aging of the population is not new. Member States and the European Commission have for several years allocated financial and human resources to this field. During the Sixth Research Framework Programme (FP6) 2002-2006, the EU financed 25 collaborative projects on these diseases with €111 million of funding, a third of which was dedicated to the study of Alzheimer’s disease. Efforts were further strengthened by FP7 (2007-2013), as one-third of funding designated for brain research in 2008-2009 was allocated to neurodegenerative disease research. But if important discoveries have been made in recent years, there is still no treatment for Alzheimer’s disease, and the risk factors are still unknown. Thus it is necessary to increase efforts and improve the efficiency of methods used. How? By emphasising transnational coordination of fundamental, clinical and social research in the field.

Close to 85% of public research funds in the EU are spent independently by Member States. Recently, the EU increased collaboration tools (ERA-NET actions, Article 169 initiatives), in order to allow coordination of national research programmes. One success story is the implementation of collaboration tools and research on rare illnesses. Until three years ago, before the launch of E-Rare (ERA-Net for research programmes on rare diseases), national research programmes in the field were independent. Today E-Rare allows them to work with larger pool of patients and to share results as well as financial resources. In fact, 40% of funds dedicated to research on rare diseases by Member States in E-Rare are part of joint calls. But if these collaboration tools have had an effect comparable to that of fertiliser on uncultivated land in certain sectors, the scope of the problem is such that these tools are not enough.

… and a strategic research agenda

The joint programme was born at a time of success and blockages between national programmes. Of these blockages, there were three main problems: reaching critical mass, obtaining policy coverage and agreeing on framework conditions, requiring a decision taken by the research minister. The framework conditions represent everything that ensures the machine functions properly (joints calls, rules for participations and compatible intellectual property, etc.). Introduced in a July 2008 Commission Communication, the new concept of collaboration, dubbed joint programming, aims to make Member States define a common vision and a strategic research agenda as well as cope with the societal risks which national programmes can not respond to alone. “A very important point about the joint programme is that the participation of Member States and Associated Countries is on a voluntary basis”, explains Philippe Amouyel, director general of the Institut Pasteur de Lille (FR) and coordinator of the research path of the French Alzheimer’s plan.

“In summary, to establish a joint programme, a theme must be chosen with a major societal impact and a strategic agenda between Member States wishing to participate must be defined. And to make all of this function, there needs to be a management structure”, continues Philippe Amouyel. The idea is not to spend more money, but to use the money invested in research fields common in all European countries in a more efficient manner (renewable energies, climate change, neurodegenerative diseases, etc.), coordinating national programmes around common objectives and a common timeline. This approach will allow the EU to better focus its resources on tackling societal challenges, speak with one voice on the international stage, improve the quality of research proposals and pool information and experts across different Member States and Associated Countries. “The joint programme is not a new collaboration instrument that will be added to the many pre-existing tools. It is a programme that can, when appropriate, use those tools to help Member States ensure its concrete execution” clarifies Philippe Amouyel.

On area ready for joint programming

Why were neurodegenerative diseases chosen as the pilot joint programme? “When one looks at the levels of funding and the fragmentation of scientific and technological domains in Europe and compares them to those the United States, dementia research appears to be one of the least funded areas and most fragmented in Europe”, explains Philippe Amouyel. Moreoever, the prevalence of these illnesses is drastically increasing, and during the French presidency of the EU in 2008, as the Commission published its communication on the joint programme, Nicolas Sarkozy decided to make the fight against Alzheimer’s disease a national priority.

At this stage, a declaration of intent to launch a joint programme was presented in December 2008. 24 Member States and Associated Countries have expressed their desire to participate and agreed on the main points of the management structure and on the decision processes to put into place and prepare an ambitious strategic research agenda. One of the next steps will consist of, with the support of a high-level international scientific council, defining specific, measurable, acceptable, realistic and timely objectives (SMART objectives). “Once the strategic agenda and the SMART objectives are decided, it will be as though there is a menu in front of us. Each participating country will be able to choose to work towards objectives that correspond best to their competencies, guidance and available financial resources”, says Philippe Amouyel. From a management structure point of view, a committee was put into place and met for the first time last June. The scientific council, meanwhile, is being constructed.

Even if a first efficiency evaluation of the joint programme on Alzheimer’s disease and other neurodegenerative diseases can not be conducted before 2015 – the date to evaluate the added value it offers, in terms of research results, the collaboration of participating states – this pilot initiative could nevertheless rapidly open the path towards other similar programmes, notably in the domain of energy technology and agricultural research.

Audrey Binet

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