“JPND is a clear window of opportunity to participate in an exercise to do global research to address neurodegeneration. Of course, it is up to the participating countries to shape this issue in a better fashion. We are now jumping from not just being a European but a global player, and this is a good opportunity for Europe to translate the knowledge into better clinical practice and better economies in Europe.”  

What is the general perception of JPND in Spain?
It is rather positive – maybe JPND is ‘half-way’ there to ultimate success, as there are still questions pending. One is the alignment of national and EU programmes, and the second is better participation of industry in performing neurodegenerative disease research. The third is more and better research and transfer of knowledge in health and social services. But overall there is a positive approach to JPND.

How are Spanish researchers performing in JPND initiatives?
Our perception is that they are doing rather well if you take into account the level of commitment of research funds, the relative size of our research community in neurodegenerative diseases, and the relevance of the call topics to date, some of which are better suited to our researchers than others.

Are there initiatives in Spain for supporting researchers willing to apply for JPND funding?
Although there are no specific initiatives assigned to JPND, there are more general initiatives that can serve the purpose of fostering participation of Spanish researchers in JPND. For example, the CIBER virtual research centers and the Health Research Institutes, certified according to RD 339/2004, receive funds that enable them to foster this type of participation.

What do you think is the main benefit for your country for participating in JPND?
The main benefits come from putting together Spanish researchers and the Ministerial research capacities and to linking to and engaging with the research capacities in the other countries participating in JPND. This is what makes the difference!

And the ISCIII? Are there benefits to being a member of the JPND Management Board?
From the ISCIII perspective, there are benefits because ISCIII is entitled to shape and fund National Health System research capacities in Spain. It is also a good window of opportunity to form a bridge between JPND and the national programmes, and also the Programme Committee delegates in Horizon 2020 in the different EU societal challenges.

“I would be a bit sad if JPND only focused on projects with 3-5 countries involved. In these projects the researchers continue in the same way as they did before, and they do not experience these cultural influences from different specialists and you would not get this circular effect that can spread around to all the countries. So I say to JPND that you should support projects that involve as many of the participating countries as possible.”

What impact do you think JPND is having?
At the start I was not so sure about JPND because I felt it was more of a top-down idea where it is decided more-or-less from the Management Board what areas should be focused on, with the input of the Scientific Advisory Board. I was afraid that the research councils and funding organisations in each country would reduce their interest. Now, I can only give the example from my own country, Sweden, but I can say that they have been extremely positive to JPND, and they have put in extra funds, in addition to the support that already existed. This extra addition of funding is due to JPND, and I am sure that this is the case in most other countries. Globally, I think there is growing interest worldwide in JPND – we can see the collaborations starting with Canada, with interest also now coming from Asia and America.

What do you think are the most pressing issue in this area of research?
This is a field that is really evolving. From a societal perspective, disorders like Alzheimer’s, Parkinson’s and Vascular dementia are very common and are a high cost to society. That means in the future, with aging populations, greater efforts are required to stimulate research, and to simulate clinical work with these patients. Due to the increasing demand, and increasing age of populations, if we don’t do anything in research, there will be a collapse of our healthcare systems. So we need to focus not only on diagnostic processes, but we need to also develop new pharmacological treatment strategies for these patients.

What is the general feeling you get from researchers in this field?
There are different views from different categories of people. If you look from the GP/Doctor perspective, I can see that GPs are rather nihilistic. They have not yet seen any great success from the new drugs that are really the first-generation of pharmacological treatments in this area, so they may be a bit negative. However, from a society perspective we are forming teams of carers for community care. With more research these teams are really increasing their knowledge, and that gives back very positive feelings. From the specialist clinicians I think it is noticed that Nobel prizes are regularly given out in this field (e.g. prion-like properties, signalling systems in the brain, MRI and PET, new microscopes to study the interaction of neurons + chemical substances in the brain). It is a fascinating research area, and an area that is more and more recognised.

What would your advice be to younger researchers?
For young people who want to come into research, the brain is fascinating. The explosion in molecular biology, cell biology, genetic findings combined with the technological advancements seen now with MRI, functional imaging, positron emission tomography are very exciting for brain research. So even if we are not solving the ultimate question in the short term, we will see great progress through these new technologies coming into this field. I really want to combine fundamental knowledge about the diseases with technology and biochemical research, and to also give young people future possibilities not only for a clinical or academic career, but also to work with industry in the future. It is not only important for them but also for Europe. Europe has many strengths – we have good clinical work, good pre-clinical work, but have lost part of the industry. If we could really integrate these three, we would play a stronger part in developing new drugs and developing ideas within Europe.

Click here to read Bengt Winblad’s biography.


“The challenge is global, so the action must be global – yours and mine!”

What is the general perception of JPND in Slovenia?
Of the many initiatives of which I am aware, JPND is probably the most well-perceived and, from the organisational point-of-view, the most advanced. The idea of JPND is very nicely perceived within both the political and research spheres, and also from the clinical perspective.  This is probably one of the reasons why, in 2015, Slovenia is hosting three major events associated with Dementia –  Alzheimer Europe, the European Alzheimer’s Disease Consortium, and a Vascular Dementia conference – all of these events were somehow facilitated by JPND being part of the new Slovenian philosophy on neurodegeneration.

How are Slovenian researchers performing in JPND initiatives?
Slovenian researchers were part of the first call (2011) – where we participated in two consortia – BIOMARKAPD and DEMTEST, and both of these have facilitated networking and increased the level of standards among Slovenian scientists.  It is interesting that although the recent recession has reduced the amount of money available for research, the researchers themselves wrote a letter to the Ministry asking them to support the JPND initiatives.

Are there initiatives in Slovenia for supporting researchers willing to apply for JPND funding?
There were very energetic initiatives when JPND was established and when the first call was launched in 2011.  However, due to the recent recession and global financial crisis, this support has been more verbal than actual. However, the Directorate for Science at the Ministry of Education, Science and Sport is striving to get funding for the JPND calls in 2016. It is also very good that recently the Ministry of Health expressed an interest in JPND, particularly in more clinically-oriented studies and also in palliative care, so we have now their verbal promise that they will join the boat.

What do you think is the main benefit for your country for participating in JPND?
For Slovenia, as a small country of 2 million people, the consequences of the first call were very, very great for Slovenia.  It not only advanced our neuroscience but, importantly, it allowed us to conduct extensive networking at the time of the first call.  Probably JPND is the reason why we are one of the rare successful countries to apply for the TEAMING project, and we are in the first phase. We are also more successful in applying for international calls – one of our successes is a project in which, together with Norwegian   colleagues, we are trying to establish a dementia-friendly city in one of the smaller cities – Telja.  Additionally, through the JPND     initiative to identify young leaders or ambassadors of dementia, we founded a group of several of them and in fact two of them had a very active role in the G7 London JPND meeting and also the WHO  Ministerial meeting in Geneva.

And your Ministry? Are there benefits to being a member of the JPND Management Board?
Certainly. As a rather small, newly-emerged country, it is very important for our scientists as well as our politicians to make the right priorities, based on the right values.  Being a part of a larger group of scientists as well as politicians certainly helps that we are making the right choices.  So being part of the MB of JPND is very important, particularly because of its philosophy, as scientist/clinicians are forced to sit with their colleagues from the Ministry, so the decision is logical and economically sound.

Prof. Gunhild Waldemar of Rigshospitalet and Copenhagen University participated in BIOMARKAPD, a JPND project on biomarkers for Alzheimer’s disease and Parkinson’s disease that ran from 2012-2015.

She spoke with JPND about the importance of biomarkers for research into neurodegenerative diseases, her hopes for the field, and advice she would give to early-career researchers.

“Engage now and fully, because JPND is addressing the challenges of your society, which are growing exponentially! And it is even providing some solutions already!”

What do you think is the main benefit for your country in participating in JPND?
The benefits are multifold. Our participation in JPND is stimulating the Ministry of Health to finally develop a National Plan for addressing Neurodegenerative Diseases. Slovenian researchers are also focusing on this area and follow the funding calls. The JPND Strategic Research Agenda is a kind of “lighthouse” for Slovenian policymakers in diverse Ministries and Research Performing Organisations. In addition, an informal group of the “Young Leaders for Promotion of Dementia-related issues” is being created, which is influenced by JPND efforts in this area. Alzheimer Europe also held its regular meeting in Slovenia in 2015. A project proposal for a “Teaming” call has been successful in the first phase, also due to the important research component on dementia.

And your Ministry? Are there benefits to being a member of the JPND Management Board?
Yes, certainly, for the same reasons. JPND efficiently addresses the problems that are already very serious in our country and will be even more dramatic in the future. Therefore we have to prepare adequately and quickly for these new challenges ahead. We are trying to stimulate our Ministry of Health and other Ministries to more actively organize themselves towards creating effective solutions for the increasing problems deriving from the challenge of dementia. Participation in the MB of JPND supplies us with information and understanding of the complexity of the phenomenon.

What is the general perception of JPND in Slovenia?
JPND is relatively well-known and appreciated among the following stakeholders in Slovenia: ND field researchers as well as some clinicians and diagnosticians; policymakers at the Ministry of Education, Science and Sport and the Ministry for Health; Young Research Leaders who are promoting the campaign against dementia; Slovenian Members of the European Parliament; Civil society organisations dealing with this phenomenon (e.g. “Spominčica”).

How are Slovenian researchers performing in JPND initiatives?
So far they have participated only in the first call – harmonisation of biomarkers. Two Slovenian research groups were successful in this call, which was an excellent result for a small country like Slovenia. Unfortunately, due to cuts in the National State budget, we have not been able to participate in more calls so far.

Are there initiatives in Slovenia for supporting researchers who wish to apply for JPND funding?
At the moment there exists only the strivings of the Directorate for Science at the Ministry of Education, Science and Sport for funding to be reserved in the 2016 National State budget for participation in the planned JPND calls for that year.

“Behavioural problems are the key issues for people with dementia and for carers, and we have to focus on how we can improve the situation for them. I am also interested in the plasticity of the brain and how we can collaborate in order to improve the social function of people with dementia.”

“What we have found so far is that each approach should be person-centred and not standardized and the hopeful thing for governments is that psychosocial interventions prove to be cost-effective if they succeed in being effective.”

What area of research gets you particularly excited?
Dementia research has been getting me excited for many years because it is about solving the secrets of life, and in particular the secrets of the brain. Because there are so many disciplines involved in dementia research, I would be fascinated to know what would happen if we put all our knowledge together, and really try to address the full picture and full puzzle of dementia. I am very hopeful that something new will come up soon.

What do you think is the most pressing issue in this area of research?
The most pressing problem is the behavioural problems of people with dementia. These problems are very annoying for the people themselves, and for the families and care givers and it is very hard to deal with it. I think research has to do a better job at trying to deal with these problems and this also endangers the social health of people with dementia. I would like to create a new theme within JPND of “social health” in dementia.

What would be your advice for early career researchers?
It is very important for researchers to be curious. Although you have to follow the research protocols and guidelines, be curious, and follow your curiosity to new questions. It can be hard and your bright ideas will be rejected, but just continue to think harder. As a woman at a relatively high level in research, “keep going for it” is my main advice. I had to struggle to come into this male-dominated world of research – I am the only woman in the Scientific Advisory Board for example. But you can do it, and when you are in, it is more fun than trouble, but take your chances and go for it!

How can health and social care research be better supported in JPND?
The obvious answer is by funding research proposals and also by providing guidance in the research agenda, so that researchers know where to focus, and they don’t come up with haphazard initiatives but initiatives embedded in a stream of correlated research. For instance, if you take social health, we can build on existing theoretical knowledge in social health.

What is the main benefit of JPND for patients and patient organisations?
Research is relevant for patients as they are the first to benefit from it. Some research is for today’s patient and much research is for the patient of tomorrow but nonetheless, we are doing it for the patients themselves. We do have good connections with patient organisations in Europe and in the national countries. And they are in some ways involved in JPND for research initiatives.

What impact do you think JPND is having?
We should not underestimate JPND’s influence. It is not only about the European Research Agenda, which is tremendously important, but also that all disciplines are involved. We have to take the next step to integrate it at the national level, as it also influences the national research agendas. On a global scale, there is not a comparable initiative. I think JPND is very, very important.

Click here to read Myrra Vernooij-Dassen’s biography.


“From my own perspective, participating in JPND projects has been a very good experience. You meet different people from different disciplines, you learn how to do things differently, you get different perspectives on things, and I think that enriches the field.”

What impact do you think JPND is having?
I think JPND is having a fairly significant impact. The profile of JPND-sponsored programmes has increased significantly in recent years.  Researchers are now very aware of the benefits that synergies created through JPND-supported multi-national research brings. This has made researchers very motivated to participate in JPND-supported calls. I believe that this transnational synergistic approach to research is the right one. JPND has identified that by tackling the big challenges in the field of neurodegenerative disorders in a coordinated manner, the impact of research outputs can be maximised.

JPND has also succeeded in bringing researchers into the field of neurodegenerative disease research who might otherwise have found it difficult to break into areas beyond their own expertise. I am currently collaborating with a group of exercise physiologists on a JPND project that examines the benefits of exercise intervention for people with cognitive impairment. I think that this type of collaborative approach is a great opportunity for us going forward to refresh the field and expand its boundaries while facilitating the growth and exchange of interdisciplinary knowledge.

What is your experience of JPND-supported projects?
What I really like about multi-national projects, such as the JPND ones I’m involved in, is the added value they afford our research. Ireland’s population base does not allow us access to a large number of patients compared to other research groups in Europe, but by working with them, everyone benefits from what we can adopt from each other’s experiences, exploit in terms of resources and learn from new perspectives.

Do you have any general aspirations for this field of research?
Human capital development is very important right now in the field of neurodegenerative disease research, and no less so in dementia research, which I have a particular interest in. At the moment the approach to research is siloed, with basic scientists, clinicians, service providers and policy makers often working independently from one another. This approach needs changing so that the neuroscience research we are doing is rapidly translated into clinical fields and then into policy and practice. The only way to achieve this is through human capital, by educating people from all these areas together – that’s the future and it is so important.

There are a number of initiatives that we are working on in Ireland to achieve consensus and address the siloed approach to research. The next step will be to create human capital-type programmes that are integrated, applied and inter-disciplinary. Even in the event of the development of a very effective disease-modifying treatment for Alzheimer’s disease, patients will still require quality care and informed clinical practice – all this is only achievable with sympathetic, well-considered policy implementation.

We need to get the best value we can from existing resources and we can do that by doing really good quality research. I think JPND is contributing by trying to meet the big economic challenge, as well as the clinical and biological challenges.”

What impact do you think JPND is having?
I think it is having a big impact as a focal point. I think it has managed to bring together discussions and thinking around this set of conditions, and the research that is needed to tackle them.  I think it has helped to generate more funding for this endeavor, too.  I think it has also helped to bring together researchers to communicate what they are doing.  So lots and lots of ways: I’m very positive about it. I came in as a social scientist into what is an area dominated by biomedical science, but am very positive about what JPND is doing in my area of Health and Social Research.

Did you always want to work in the area of health and social care research?
I started off doing a Masters degree in Econometrics and Mathematical Economics, which I loved intellectually, but I got bored with doing something that felt too removed from the real world.  I have always worked in Health and Social Care Research, and I absolutely love it. And I particularly like the dementia field, as I think it brings enormous intellectual challenges. I have a parent with dementia – indeed, almost everyone knows someone with dementia, so it’s a real-world problem today, and I like working in an area that is that challenging.

What is the best piece of advice you have received in your own career?
I’ve been very fortunate to work with people who are strong on the science of research and I hugely value that. I have also been very fortunate in my job to work with people whose main priorities are changing policy or putting policy into practice, and they constantly remind me that university-based researchers need to be aware that there is a real world out there, and we need to be serving that real world – so it is about balancing the scientific robustness with what we can do for today’s populations.
And what would your advice be to younger researchers?
My advice would be “come into this field and stay in it”.  This is an interesting field partly because there are no simple solutions.  There are huge challenges, so from that point of view, it is very good.  It is important that researchers keep a broad profile and that they look to do good, solid scientific research.  In my field, I would want them to do research that will have an impact on the real world and to do that quite quickly, so that’s again balancing the robustness of science with the relevance to today’s challenges.

How can we better involve patients in research?
As a research community, we have not involved patients enough, and I think we’ve just assumed that they are not able to participate – that’s clearly not the case.  We need to understand what they see as important, both in the short- and long-term. They are not the only people whose views need to be taken into account, but we need to include them more in research, in terms of how we plan it and how we interpret it. Doing so will generate better value for our research.

Click here to read Martin Knapp’s biography.

“JPND is a global initiative that is likely to provide breakthrough knowledge about dementia causes, mechanisms, treatment and care. It both stimulates and adds value to national funded research in the area. The more countries that join JPND, the stronger and more successful will this coordinated action become.”

What is the general perception of JPND in Norway?
JPND has been steadily gaining attention as an important international research initiative among Norwegian researchers, as well as among health policy makers and related patient/public organisations.

How are Norwegian researchers performing in JPND initiatives?
Norway has a relatively small research community. Nevertheless, we are pleased to see that Norwegian researchers are doing well in JPND. Several experts have actively contributed in working groups that are developing strategic measures, and Norwegian researchers are participating in successful consortia from five of the six JPND transnational joint calls so far. Norway has several strong and internationally well-known groups on brain research. The opportunities presented by JPND will no doubt attract their attention to research on neurodegenerative diseases.

Are there initiatives in Norway for supporting researchers who wish to apply for JPND funding?
Yes, the Research Council of Norway (RCN) is promoting JPND by providing information and arranging conferences through the relevant national health research programmes. The RCN is also developing a national strategy for JPND research and will create a Norwegian JPND web page. In addition, the Norwegian Health Association, which is a voluntary humanitarian organisation, runs a program supporting research on the causes and mechanisms of dementia-related diseases. This contribution complements nicely the government-funded research in the area.

What do you think is the main benefit for your country in participating in JPND?
In my opinion, participation in JPND has several benefits for Norway. JPND is a well-organised and well-managed joint programme. There are highly competent people at all levels. Being successful in JPND will really enhance both the capacity and quality of Norwegian research in neurodegenerative disorders. Neurodegenerative diseases are one of the greatest medical challenges our society needs to meet, and that can only be done by joint international efforts in research and innovation. In joint research programs we are more likely to meet the common goals in research, discovery and innovation than working alone.

And your Ministry? Are there benefits to being a member of the JPND Management Board?
Being a member of the JPND Management Board means that we have a voice and a vote in discussions on strategic issues and goals, follow-up actions and research priorities. From the perspective of the Norwegian Ministry of Health and Care services, it also gives valuable experience and knowledge of the JPI instrument.

“Research is all about increasing quality of life and cannot happen without public participation.”

“Never be afraid to ask questions, even though we, as scientists, don’t have all the answers.”

“Take care of your brain by embracing a lifestyle that promotes its overall health.”

What in your opinion are the most pressing issues in research into neurodegenerative diseases?
Neurodegenerative diseases present us with several paradoxes: A number of conditions share several features in common, and yet even within a particular disease, a subset of patients display dissimilar symptomatic profiles and pathological features. In conditions like Huntington’s disease, there is a clear genetic cause, whereas in others, such as Alzheimer’s disease, genetic mutations are only present in a small subcategory of individuals. Unfortunately, there is also a lack of models that really work, and this makes it difficult to understand the complex pathophysiological mechanisms involved. The identification of biomarkers that potentially predict neurodegenerative diseases in the pre-symptomatic stage will not only help in diagnosis but will also enhance our understanding of the underlying pathological mechanisms.

What advice would you give to young researchers who want to build a career in this field of research?
Work hard, be passionate and never shy away from asking questions. Neuroscience is a challenging field, so expect the unexpected.

How can research into healthcare and social care be better supported to build up its capacity?
Countries that have committed themselves to enhancing the level of research in health and social care are increasing, as can be testified to by the various national dementia strategies that have been launched in recent years. Although research may be seen as an element of risk in terms of return on investment, it is essential for the promotion of well being and modernisation of health and social services. High-quality research that promotes innovation and good practice while ensuring scientific collaboration, public involvement and effective transfer of knowledge will have a positive impact on the lives of people living with neurodegenerative conditions.

What impact do you think JPND is having on neurodegenerative disease research?
The challenges that neurodegenerative diseases present to us are far too many, and thus coordinating our efforts is a major prerequisite in responding to this. Besides, joining forces is also essential in promoting high-quality scientific research. There is no doubt that JPND’s Research Strategy is reaping its fruits, as can be attested to by the level of response to the scientific calls.

In your opinion, what is the benefit of JPND for patients and/or patient organisations?
JPND is already benefiting the lives of people living with neurodegenerative diseases and their caregivers. Just by taking a look at the supported research projects under the JPND 2012 translational call, which focused on themes evaluating health care policies, strategies and interventions for neurodegenerative diseases, one can appreciate the impact that such research will have on areas such as timely diagnosis and access to care.

Click here to read Charles Scerri’s biography.