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“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.

Professor Judes Poirier of McGill University and the Douglas Institute in Montreal, Canada, was a participant in BIOMARKAPD, a JPND project on biomarkers for Alzheimer’s disease and Parkinson’s disease that ran from 2012-2015.

In an interview with JPND, he expounds on how advancements in the biomarkers field, combined with genetics, is bringing tremendous change to the study of Alzheimer’s disease and Parkinson’s disease.

“JPND is a unique European and global platform that has seen remarkable development over the last five years. First, it fills the gaps between policymakers, researchers, practitioners and patients. But even more importantly, it is assuming a primacy in the field of neurodegenerative diseases through its numerous original mechanisms aiming to harmonize and defragment. JPND has become the unavoidable starting point for anyone linked to neurodegenerative diseases in Europe.”

What is the general perception of JPND in Croatia?
When JPND began in 2009, in the minds of Croatian researchers, policymakers and citizens it was recognized as only one of several initiatives dealing with research into brain diseases. However, in the most recent years in particular, JPND has become recognized in Croatia as THE programme with the largest and utmost importance on the European and global levels. Croatian scientists are recognizing the substantial influence of JPND reports and documents in the European research area. They also recognize the shift from the previously dominant funding schemes (e.g. FP7, Horizon2020) towards an increasing importance of the JPND.
How are Croatian researchers performing in JPND initiatives?
Croatian researchers whose research is focused on the human nervous system represent a very vibrant and active community visible in their involvement in many European programs, projects and initiatives. On the other hand, their involvement in JPND is still in a transition phase. This is mostly due to local policymakers, who are invariably lagging behind in recognizing the importance of new models of financing and new models of organizing on the European level. In the last two years alone, the number of enquires about JPND from the Croatian research community has increased several times over.
Are there initiatives in Croatia for supporting researchers who wish to apply for JPND funding?
Currently the Ministry of Health and the Ministry of Science, Education and Sport are trying to find the right model of support for Croatian researchers. As a researcher working mostly in Croatia, I can say that it is no longer under discussion whether Croatia needs to participate in JPND, but rather from which moment it will start to fully contribute to all JPND activities. The number of clinical practitioners and researchers has reached a critical mass for recognizing JPND as the central programme for this large group of diseases. I am sure that Croatia will start to be more actively involved in supporting their researchers as they apply for JPND funding.
What do you think is the main benefit for your country in participating in JPND?
There are at least two levels of benefits for Croatia’s participation in JPND. First, being a rather small country of 4.5 million people, increased international networking is recognized as the best model for success in the biomedical field. Indeed, Croatian researchers dealing with neurodegenerative diseases are very often either partners or coordinators of large European consortia, and JPND offers possibilities that fit perfectly with their needs. Moreover, JPND is useful for Croatian society as it represents an excellent role model in how united action at the EU and global levels can bring about clear, positive outcomes. JPND represents a kind of exercise for small countries and young members of the EU – it helps Croatian society to learn how to benefit from being actively involved in this dynamic and vivid community.

“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.

In your opinion, what is the single biggest challenge for researchers investigating neurodegenerative disorders like Alzheimer’s or Parkinson’s?

I feel that a big challenge if not the biggest challenge for researchers investigating neurodegenerative disorders is the difficulty of disease definition and the overlap with ageing. It is worth restating the obvious fact that diseases as such do not exist although clearly unwell people exist. The diseases are merely classifications that we use to help us understand disease in general and to manage patients individually. Thus we use many different dimensions to classify neurodegenerative diseases. Clinicians tend to view post mor-tem examination as the gold standard for diagnosis but in each case neuro-pathologists also have great difficulty in deciding what is out with the common ageing process. We need greater clarity about which dimensions we are talking about, for example whether it is a particular molecular pathway, a constellation of histological features or a variety of functional deficits. As our understanding in-creases it may well be that we learn to distinguish a number of different processes within the Alzheimer rubric. How we then relate these processes to the processes that occur to us all as we get older will remain a major challenge.

At the moment, what area of your own personal research gets you excited?

My interest has always been in the younger patient, in particular those with familial dementias as this reflects clinical practice in the UK where it is the rare and younger patients that tend to be referred to neurologists. It has been a fascinating area of research to see how a rare type of Alzheimer’s disease, or of the other degenerative dementias that are familial, can be very informative. What has remained has been the interest in the problems that are presented in the neurology clinic and with experience the increasing appreciation of the heterogeneity of patients which in itself must hold important clues.

How can people with neurodegenerative disorders contribute to the prioritization of research?

Each individual with a neurodegenerative disorder and their family brings a unique experience. The prioritisation needs to be a partnership and a dialogue around what is important and what is a tractable problem. It can be easy to forget though that there are an enormous number of skills in the patient community that ensures that it is a very rich partnership.

What kind of impact do you think JPND has had to date on the ND research community in Europe?

JPND has had a major impact on neurodegeneration research in Europe and is looked upon as a model around the world. Although competition to ensure funding goes to the best sciences is essential, collaboration is the future. JPND has provided the infrastructure for safe and creative collaboration.

Why do you think there has been so little progress, if any, in developing a drug that can slow the progression of neurodegenerative disorders?

A major problem remains the preclinical to clinical translation. For some of the drugs that have failed in phase 3 clinical testing, it is clear that from the preclinical data it would have been very surprising if they had worked. Another big issue is that we now have far better insight into how the pathology of Alzheimer’s disease progresses some 10-15 years in advance of the clinical symptoms – or at least those symptoms that can be detected using clinical measurement instruments such as the ADAS-cog. The drugs that have failed were all tested in mild-to-moderate AD, at a stage in the disease when the pathology is already well-advanced. So, it is likely that we shall need to test drugs much earlier in the disease process. Another issue is that many of the therapeutics that have been tested did not have an appropriate separation of safety and efficacy for the medicines to be tested at doses that might have shown efficacy. Finally, patient ascertainment – ensuring that the patients that you recruit really have Alzheimer’s disease – needs to be markedly improved to remove ‘noise’ in the clinical efficacy signals.

Are you discouraged by the progress that has been made, particularly after the failure of recent drugs?

Disappointed? Yes. Discouraged? No. As I have explained above, many of the clinical failures can be explained. With each avenue tested, the field moves forward to new avenues and one of these will be successful. Compared to other diseases of the brain, such as schizophrenia for example, I think we understand neurodegenerative diseases comparatively well. Now is the time to redouble our efforts and keep going. Many new approaches are being tested and innovative trial designs, including prevention studies, are underway.

What needs to happen before we can successfully treat the individual causes of neurodegenerative disorders?

We need much more research into fundamental disease mechanisms. For example, the field still does not have a good description of how a neuron dies in neurodegenerative diseases. The field needs to start to translate the genetic findings into cell biological experiments and ultimately into preclinical in vivo studies so that we can draw a more complete picture of the disease. Some of the systems biology approaches looking at patterns of gene expression are starting to do this as well. I think that, for Alzheimer’s disease for example, it is not far-fetched to believe that we will be able to intervene so as to delay the onset of the disease by decades so as to effectively prevent the disease.

If we lived an ideal scientific environment and your organisation had unlimited resources to do a single experiment, something you could not afford right now, what would you do?

I would enrol thousands of people into a longitudinal study that would follow their cognitive performance, lifestyle, medical events, and so on in a frequent and detailed manner. I would have blood samples taken for genome analysis. I would measure their brain function in a multimodal manner – MRI, amyloid PET, FDG-PET etc – and take CSF for biomarker measurement and discovery. This cohort could be used as appropriate for clinical trials, and because of the detailed pre-analysis, very well defined cohorts could be used for specific clinical experiments.

In your opinion, what would the benefits be for ARUK by partnering with JPND?

ARUK wants to be able to fund the best research into neurodegenerative diseases, and to ensure that there is collaboration between different research groups. Finding treatments for these diseases is a massive challenge, and it seems like we need to co-ordinate our scarce resources effectively to make optimal progress.