Despite having the greatest negative impact on healthy life years, neurodegenerative diseases have not received the same level of research funding across Europe compared to other age related illnesses, such cancer and cardiovascular diseases.
Philippe Amouyel, Chair of EU Joint Programme - Neurodegenerative Disease Research (JPND), reviews Europe's efforts to develop technologies and best practices in order to cure and care for those with neurodegenerative diseases…
Neurodegenerative diseases, such as Alzheimer's, are incurable and debilitating conditions that result in the progressive degeneration or death of nerve cells, causing problems with people's movement (ataxias) or their mental functioning (dementias). Over 12 million people in Europe suffer from neurodegenerative diseases, yet treatments that prevent or stop their progression are still lacking. Of these conditions, the dementias are responsible for the greatest burden, with Alzheimer's disease representing over 60-70 per cent of cases. This heavy burden on those individuals with the disease, their relatives and society as a whole is a problem that will only get worse as the European population inexorably ages.
Research to address cause, cure and care
Despite having the greatest negative impact on healthy life years, neurodegenerative diseases have not received the same level of research funding across Europe compared to other age related illnesses, such cancer and cardiovascular diseases. There is also a huge disparity between the cost of caring for people with dementia and the amount of money spent on research into solutions. For example, figures from the UK Alzheimer's Research Trust show that for every £1m in care costs for each disease, £129,269 is spent on cancer research, £73,153 on heart disease research, £8,745 on stroke research and just £4,882 on dementia research. Indeed, the estimated economic burden (total cost) of dementia ranks higher than stroke, heart disease or cancer combined, even though allocations within national health budgets are substantially lower for dementia compared to each of these individual disease groups.1
The challenge of neurodegenerative diseases is clearly beyond the capacities of individual countries. The EU has spent €159m on such research since 2007 through the Framework Programme; however, this represents less than 10 per cent of the cumulative funding that can be proportionally expected from each country, suggesting a major fragmentation of the investment and a lack of strategic coordination. Moreover, the difficult economic climate in which Europe finds itself at the moment reinforces the need for member states to structure and optimise what should be the foundation for their future growth and economic resilience: research and innovation strategy. For example, in a model based on the progression of long-term care costs due to age related cognitive impairment in the UK population, scientists demonstrated that a treatment able to reduce the frequency of combined cognitive impairment and functional disability by 1 per cent would nearly offset expected demographic pressures.2
As well as new therapies that still may take a while to be developed, research into the best ways of caring for those already suffering from these diseases is needed. Given the current constraints on public finances in many European countries, it makes sense to pool resources in order to support research that addresses the cause, cure and care for neurodegenerative diseases. We now have the opportunity to do this through Joint Programming.
A country-led initiative
Joint Programming is a new, member states-led initiative in Europe that aims to address societal grand challenges by coordinating national research programmes within the EU to increase the impact and effectiveness of research efforts. Member states engage voluntarily in defining, developing and implementing a Strategic Research Agenda based on a common vision of how to address social challenges for which the scale and scope of national programmes alone may not be adequate.
This new concept of research collaboration was endorsed by member states in December 2008, through the EU's Competitiveness Council and research and higher education ministers, and is a key answer to the neurodegenerative disease challenge.
The EU Joint Programme – Neurodegenerative Disease Research (JPND) was the first Joint Programming initiative to be launched, and currently, 27 countries (26 EU member states and EU-associated countries, and Canada) have come together to develop and implement this new approach. As a country-led initiative, JPND has set up the Management Board as a decision-making body that comprises the ministry mandated national research funding bodies from the 27 participating countries. The scope of the programme covers research into several neurodegenerative disorders, including: Alzheimer's disease and other dementias, Parkinson's disease and related disorders, Prion disease, motor neurone diseases, Huntington's disease, spinocerebellar ataxia, and spinal muscular atrophy.
JPND aims to coordinate the currently fragmented research efforts with the ultimate goal of finding a cure for these diseases and enabling early diagnosis and targeted treatments. However, the time needed to achieve this is not predictable; and consequently, it will be essential to implement nearer-term solutions that can alleviate, even if just partially, the plight of families and the economic burden brought about by the increasing prevalence of these diseases in our ageing populations. This is why, in addition to basic scientific research, the Joint Programming activities will include clinical, social care and health services research, with the aim of developing new technologies and sharing new approaches and best practices to improve the quality of life of both patients and their caregivers.
One of the major strengths of JPND is to have prepared a research strategy from a unique consensus between outstanding scientists and all stakeholders involved in this challenge. The JPND Research Strategy, launched in February 2012, provides a framework for future investment, and addresses how the European research effort can be most effectively harnessed to improve prevention, diagnosis, treatment and patient care for these debilitating conditions.
This common strategy, delivered by the JPND Management Board, is based upon the recommendations and advice of the Scientific Advisory Board and, wherever possible, stakeholder priorities. It constitutes the very first holistic roadmap for neurodegenerative diseases research, and as such, represents the basis for any future research programming of funding that can be used by any country, including the EU, to guide research activity and investments over the coming decades in Europe.
The JPND priorities, identified in its Research Strategy, will be addressed within the next 10 years through a range of long-term, medium-to-large-scale and 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. Since the launch of the strategy earlier this year, working groups composed of JPND members, scientists and stakeholders have classified priorities according to scale, impact and agreed timelines, and it is expected that the first of the implementation initiatives will emerge by the end of 2012.
As a proof-of-concept that tailored funding approaches are possible through the JPND, during the drafting of its research strategy, the programme launched a joint transnational call that has seen €16m made available to researchers in the 21 countries that have joined the initiative. This call is addressing one of the greatest unmet needs in this field – the standardisation and harmonisation of sensitive and specific biomarkers for the diagnosis and the monitoring of progression of neurodegenerative diseases, to be used in large clinical trials in Europe. In addition to this, the Centre of Excellence Network Initiative (which involves six countries and €7m) has been endorsed by JPND to network several research centres of excellence in neurodegenerative diseases. JPND is also actively participating in the pilot European Innovation Partnership on Active and Healthy Ageing, a new initiative to involve member states in linking up the innovation chain to get products through to market faster.
All of the actions supported by the programme will be funded primarily through national research budgets. These funds will be first allocated based on the priorities identified in the JPND Research Strategy. The implementation phase will consist of a validated 'à la carte' menu, where countries can indicate on a voluntary basis which actions they can support. JPND has also prompted some countries to prepare and organise their own research agenda for neurodegenerative diseases.
Several countries, including Denmark, Italy, Ireland and the Netherlands, through their participation in JPND activities, have initiated the process of developing national strategies in this area.
Of course, despite the great national and European political will behind JPND, much more remains to be done, as the current level of research funding falls dramatically short of what is required to sustain the continuous research developments. Indeed, the primary goal of Joint Programming is to allow a synergistic use of shrinking research budgets in the difficult economic climate. Thus more structured and dedicated national action plans have to be encouraged from each participating country, and in this regard, the JPND research strategy will act as a template for national bodies that policymakers can use to grant their support for research. All of this momentum will undoubtedly help to structure research for neurodegenerative diseases as efficiently as possible, offering a competitive and attractive image of European research for the greatest benefit of its populations and economies.
'Cognitive Impairment in Older People: future demand for long-term care services and the associated costs (2007)' A Comas-Herrera, R Wittenberg, L Pickard and M Knapp 1728
This article originally appeared on Publicservice.co.uk: Defeating the degeneration