As global populations age, diseases such as Alzheimer’s and Parkinson’s, are becoming more common. These diseases cause memory loss, impaired movements and severe disability overall. But it is not only older people that are affected by neurodegenerative diseases – neuron and prion diseases, for example, also affect younger people and are similarly debilitating.
Neurodegenerative diseases put a strain on healthcare systems, patients and carers alike. While there is plenty of European research into potential treatments, it has been fragmented, slowing down overall progress.
The JPND programme was set up to bring together European researchers, national funding bodies and existing research evidence in this area to investigate the key research questions and barriers to progress. But first, the project team needed to know where the research resources were across Europe, and who was doing what already.
JUMPAHEAD was launched in 2010 to begin this work. The four-year EU-funded project mapped projects in 20 participating countries, finding out which areas were under-investigated.
Philippe Amouyel, coordinator of JUMPAHEAD and chair of JPND, says: “JUMPAHEAD helped us to see where the gaps are, allowing us to create a roadmap for JPND. We needed JUMPAHEAD to bring together the actions and funding for JPND.”
The roadmap, launched in 2012, is known as the Strategic Research Agenda (www.jpnd.eu) and sets out a 5-10 year programme for JPND. “The document was a key milestone for JPND – it gave us a shared view on neurodegenerative disease research for all EU countries,” says Amouyel.
In its initial mapping, JUMPAHEAD found that even though total spending in Europe on neurodegenerative disease research – €370 million per year – was similar to that in the US, it was achieving fewer advances. In particular, clinical research and research into healthcare and social care were underfunded.
Amouyel explains: “The US has only one budget, unlike in Europe. A single programme like JPND overcomes this disadvantage.”
As a result of JUMPAHEAD, JPND is now supporting over 25 transnational projects, which are investing over €40 million from participating countries in neurodegenerative disease research, and which involve over 160 research partners.
By helping coordinate research into neurodegenerative disorders, JUMPAHEAD has made it easier for countries and researchers to access enough resources to understand the triggers for these diseases. Patients, carers and society could benefit from better prevention, detection and treatment, while society could benefit from lower care needs and costs.
Cooperation for targeted investment
Identifying the areas to be included in the Strategic Research Agenda was key to JUMPAHEAD’s mission. When drafting the programme, the team held workshops with academic specialists in basic, clinical and healthcare/social research along with industry, patient and carer groups. These meetings resulted in a list of priorities that balance different interests and help best allocate resources.
To combine countries’ efforts effectively, the project developed common funding procedures for JPND. A common call procedure, for example, allows countries to apply for funding from a centralised European budget for joint research, allowing them to put their research money to better, more effective use.
“Country-led research initiatives usually receive 5-10% of their budget from the European Commission. JUMPAHEAD was part of a movement to increase this to 10-15% or more,” says Amouyel, adding that centrally-managed funding is more objective and better-value for investors and funders. Since 2011 the project has helped raise over €100 million for joint research programmes into neurodegenerative diseases.
JUMPAHEAD also helped participating countries coordinate and integrate the research taking place within their borders, so that countries know where their strengths and weaknesses are, and what they can offer and what they need in international research.
It has also raised awareness of JPND with dissemination material – including JPND’s website – and built concrete relationships between JPND and its core stakeholders.
Amouyel is positive about the impact of JUMPAHEAD on neurodegenerative disease research, although he says: “The best impact for patients will be when we have a cure.”
A final review of JUMPAHEAD is still ongoing, and will be used to plan JPND’s next steps and look for ways to improve its management.