Joining forces to fight neurodegenerative diseases

Abstract

The end of 2012 brought encouraging news for neurodegenerative diseases research. In December, the European Union (EU) Joint Programme—Neurodegenerative Diseases (JPND) issued two calls for research proposals, both with deadlines in March, 2013. The two new calls are on genetic, epigenetic, and environmental risk and protective factors and on evaluation of health and social care strategies, highlighting the commitment of JPND to progress across the spectrum of neurodegenerative diseases research. This broad approach, and the international collaboration that is at the heart of JPND, will be essential to reduce the growing toll of these diseases. The need for new strategies to tackle neurodegenerative diseases is evident from the results of the Global Burden of Disease Study 2010, which were also released in December, 2012. The study provides a wealth of data on mortality, disability, and life expectancy, and quantifies what many had feared—that the reported burden of neurodegenerative diseases is growing at an alarming rate. Between 1990 and 2010, the number of deaths attributed to Parkinson's disease (PD) more than doubled and estimates of the number caused by Alzheimer's disease (AD) and other dementias more than tripled. Years lived with disability attributed to these two disorders each increased by more than 70% over the same period. This growing burden is the type of daunting problem that EU Joint Programming intends to tackle. This initiative aims to facilitate collaboration between researchers in EU member states to address challenges that are beyond the capabilities of individual countries, and neurodegenerative diseases have been chosen for its ambitious pilot. JPND is intended to guide research activity in neurodegenerative disease over the next 10 years, and the first implementation phase is 2012–2014. In addition to the calls for proposals, JPND initiatives include identification of other research opportunities, formation of links with industry and other potential partners such as the European Commission (EC), and alignment of national neurodegenerative diseases plans in participating countries. 27 countries are currently signed up; these include not only EU member states but also EU-associated and other countries, in recognition that neurodegenerative diseases are a global challenge. Within the remit of JPND are not only AD and other dementias and PD and related disorders, but also prion disease, motor neuron diseases, Huntington's disease, spinocerebellar ataxia, and spinal muscular atrophy; in response to the JPND calls, proposals are welcome for research into any one or more of these disorders. Four projects received a total of €16 million after a pilot call for biomarker research proposals in 2011, and the new calls offer €19 million for risk factors and €10 million for health-care evaluation. Further calls are expected annually, and more than €100 million is due to be made available during the current phase of JPND. The money will come from the national funding agencies of participating countries, which will be able to opt in or out of each call to focus their resources on the challenges that are most pressing for their populations. Each research project must involve at least three JPND-participating countries, encouraging the international collaboration that is increasingly needed for advances in complex diseases; non-participating countries can be included in a consortium as long as they are not the majority. The results of a mapping exercise in early 2011 found that 17 of the 20 countries then participating in JPND were investing less than €15 million per year in neurodegenerative diseases research. The funding of JPND is intended to be in addition to, not instead of, such other funding; a new mapping exercise in early 2014 should confirm whether this is the case. The funding for each successful researcher will come from their own national funding agency and cannot currently be transferred between countries. Researchers will therefore not be eligible for calls if their national agencies have not opted in, and an application could be turned down despite peer-review approval if funds are insufficient at the national level. Discussions to decide how JPND might partner with the EC and the next Framework Programme, Horizon 2020, are ongoing. The limited advances in neurodegenerative disease research so far and the emerging mechanistic links between disorders mean that an initiative that transcends disease and political boundaries is welcome. However, JPND-funded research must be in addition to, and not at the expense of, other projects. We hope that JPND will be a successful pilot for research into other challenges, as well as lead to a reduction in the burden of neurodegenerative diseases.