Author Archives: jpnd

The EU Joint Programme – Neurodegenerative Disease Research (JPND) initiative[1] has launched its updated global Research and Innovation Strategy (RIS), to provide a unified framework for the support of world class research into neurodegenerative diseases.

Neurodegenerative diseases are one of the world’s leading medical and societal challenges and there are now expected to be 50 million people worldwide suffering from Alzheimer’s disease and related disorders. Globally, these numbers show no signs of abating, and it is estimated that by 2050 in Europe alone, the total direct and informal care costs for Alzheimer’s and Parkinson’s disease will exceed €350 billion annually.[2]

JPND is the first and largest collaborative research initiative established to tackle the growing challenge posed by neurodegenerative diseases. JPND’s ultimate goal is to accelerate the discovery of a cure and to enable early diagnosis for early personalised treatments. In the meantime, it is essential to implement solutions that can alleviate, albeit partially, the plight of families and the economic burden brought about by the increasing prevalence of this disease in our ageing populations. Thus besides basic research, the scientific endeavour concerns also translational and clinical, and social care and health services researches.

Today’s release of the Research and Innovation Strategy (RIS) updates the common vision of 30 JPND member countries. It renews the strategy that was first published in 2012, to tackle the major societal challenge of neurodegenerative diseases.

JPND speaks to the following individuals about the RIS.

Dr Barbara Kerstiëns, Head of the unit responsible for Non-Communicable Diseases and the Challenge of Healthy Ageing in the European Commissions‘ Directorate-General for Research & Innovation says: The European Commission is keenly aware that Neurodegenerative Diseases is one of the leading medical and societal challenges of our time. It recognises that JPND has been instrumental in addressing these by aligning and coordinating national efforts among Member States and other countries, reducing fragmentation and duplication in research and overall increasing the effectiveness and impact of research in this field.

JPND’s ambitious new RIS invites multidisciplinary and cross-sectoral collaboration as well as engagement with patients, their families and carers. Its five scientific priorities cover the full spectrum of unmet needs – the knowledge gap, the prevention gap, the early diagnosis and disease management gap, as well as the growing socio-economic challenges of caring for and assisting people faced with those diseases. The strategy takes important factors relating to ND care into account, such as comorbidities, sex and gender differences, the role of ageing and the complex ethical issues. Moreover, the RIS recommendations are in line with the Commission’s priorities in fostering innovative partnerships, taking advantage of the latest advances in digital technologies, including artificial intelligence, promoting an Open Access approach and translating research findings into evidenced-based public health policies and, ultimately, better health and social care.”

Professor Philippe Amouyel, University of Lille (France) and Chair of the JPND Management Board says: The challenge is to tackle neurodegeneration, and in particular, Alzheimer’s disease through an unprecedented collaboration at the European level and beyond. The ultimate goal is to facilitate the cooperation of researchers, to reduce fragmentation, to prevent unnecessary doubling of efforts and to pool and organise resources on a voluntary basis for the benefit of the populations. Our RIS forms the basis for current and future JPND initiatives, as well as a fundamental reference point for the national and organisational strategic plans. It provides a global common framework for future investment that addresses how countries can effectively improve prevention, diagnosis, treatment and patient care.

JPND Scientific Advisory Board Chair, Professor Thomas Gasser says:Since the publication of our first RIS in 2012, there have been major advances, both scientific and technological, that have shaped the renewed RIS. Data science, including artificial intelligence-driven methods of data analyses, has transformed many research areas, and this is now reflected in the updated Strategy. Another important issue reflected in the renewed Strategy is the increasing awareness that the inclusion of factors like economic and cultural differences, gender issues and public and patient involvement must clearly play a more prominent role.”  Click here for JPND’s full interview with Prof Gasser.

Professor Mogens Hørder, JPND Management Board Member says: “Since the 2012 research strategy, there has been an increased alignment of goals and methodologies being built up among research institutions of JPND members. The renewed RIS sees the participation of important players outside of Europe in JPND, which forms a valuable basis for the role of JPND in the global investment in neurodegenerative disease research.

For JPND Executive Board member Dr Jacqueline Hoogendam, “the value of collaborative research should not be underestimated.” She says: “With the common vision adopted by the 30 JPND member countries, JPND enables neurodegenerative disease research in the most pressing areas at a global level, with efficient use of limited resources. In bringing together researchers from different countries whose collaborations extend beyond their joint research activities, JPND contributes to the development of the global community of neurodegenerative disease researchers.

JPND is committed to aligning and building upon national programmes to increase impact and effectiveness of research and to identify common goals that would benefit from joint action.

JPND has identified a number of thematic scientific priorities for future research:

  • The origins and progression of neurodegenerative diseases
  • Disease mechanisms and models
  • Diagnosis, prognosis and disease definitions
  • Developing therapies, preventive strategies and interventions
  • Health and social care

JPND is working to implement the above goals through:

  • Building supportive infrastructure and platforms via harmonisation of data and materials and promotion of an open access approach to the sharing of data and resources
  • Partnering with industry and healthcare providers and promoting innovation within a multi-partner international funding framework
  • Developing greater interaction with regulators to integrate patient needs
  • Linking worldwide research efforts in neurodegenerative disease research
  • Utilising resources and infrastructure outside of Europe and better connecting global patient public involvement (PPI)
  • Building capacity through strengthening certain neurodegenerative disease research areas and establishing networks across and between disciplines and researchers
  • Developing an evidence-led educational approach to embed a research culture across the full spectrum of health, social and palliative care
  • Strengthening the connection to policy makers
  • Ensuring effective communication of the research agenda and engaging with a wide range of sectors and stakeholders

 

JPND receives support from the European Commission.

 

To download a full copy of the Research and Innovation Strategy, click here.

To download an Executive Summary of the Research and Innovation Strategy, click here.

For more information about the 2019 Research and Innovation Strategy, click here.

For the full interview with JPND’s Scientific Advisory Board Chair Thomas Gasser about the Research and Innovation Strategy, click here.

 

[1] Joint Programming is a collaborative approach supported by the European Commission in which countries define a common vision and a strategic research agenda, in order to address major societal challenges which are beyond the scale of any national research programme. The Joint Programme on Neurodegenerative Disease Research (JPND) was established as the pilot for this new type of coordinated approach to research.
[2] Maresova  et al.,Alzheimer’s and Parkinson’s Diseases: Expected Economic Impact on Europe-A Call for a Uniform European Strategy, 2016, Journal of Alzheimer’s Disease, 54(3):1123-1133.

 

 

Freezing of gait (FoG) is a disabling symptom of Parkinson’s Disease, characterised by patients becoming stuck while walking and unable to move forward. It is well-known to lead to falls and lower quality of life, making it an important target for treatment.

Research has linked FoG to aspects of attention and cognitive control. Patients with Parkinson’s Disease who self-reported FoG and who were free from dementia were randomly allocated to receive either a cognitive training intervention or an active control.

65 patients were randomised into the study. 20 patients were randomly assigned to the cognitive training intervention and 18 were randomised to the active control group. Both groups were clinician-led and conducted twice-weekly for seven weeks. The primary outcome was the percentage of time spent frozen during a ‘Timed Up and Go’ task, assessed while patients were both on and off
dopaminergic medications.

A large and statistically significant reduction in FoG severity was shown in patients in the cognitive training group on dopaminergic medication, compared to participants in the active control group on dopaminergic medication. Patients who received cognitive training also showed improved cognitive processing speed and reduced daytime sleepiness compared to those in the active control while accounting for the effect of dopaminergic medication. There was no difference between groups when they were tested without their regular dopaminergic medication. More studies using larger samples are needed to investigate this initial finding that cognitive training can reduce the severity of freezing of gait in Parkinson’s diseases patients.

Paper: “Cognitive training for freezing of gait in Parkinson’s Disease: a randomised controlled trial”

Reprinted by materials provided by The University of Sydney

The EU Joint Programme – Neurodegenerative Disease Research (JPND) initiative has announced a joint transnational call for multinational research on personalised medicine for neurodegenerative diseases.

Neurodegenerative diseases are debilitating and still largely untreatable conditions. These diseases are characterised by a large variability in their origins, mechanisms and clinical expression, requiring treatments that will need to take into account all these specificities. Deciphering this variability is one of the biggest challenges in the treatment of neurodegenerative diseases and the way forward is Precision Medicine, supported by highly personalised approaches for the greatest benefit of the patients.

In this context, in partnership with the European Commission, JPND announced today a new call, inviting multinational research teams to submit proposals for ambitious, innovative, multinational and multidisciplinary collaborative research projects to change the trajectory of these debilitating diseases through the development of Precision Medicine approaches.

JPND has chosen to focus in the area of Precision Medicine, which relates to the targeting of specific elements responsible for pathology in a given individual at a particular point in time. It is an emerging approach for disease prevention, diagnosis and treatment that takes into account individual variability in genes, biological/molecular characteristics together with environmental and lifestyle factors.

According to Professor Philippe Amouyel, University of Lille (France) and Chair of the JPND Management Board:

Professor Philippe Amouyel, Chair of JPND

“During the last ten years, researchers have progressively uncovered the high complexity and wide diversity of neurodegenerative diseases. We need now to complete and use this massive amount of knowledge to develop targeted approaches to more efficiently fight the dramatic progression of these diseases.”

According to Professor Thomas Gasser, University of Tübingen (Germany) and Chair of the JPND Scientific Advisory Board:

Progresses in precision medicine will be a unique way to develop innovative approaches to prevent, slow down and cure neurodegenerative diseases. This call aims to harness the necessary expertise across Europe and globally, to address this research challenge.

Professor Amouyel added: “With this in mind, JPND participating countries in close collaboration with the European Commission have identified precision medicine as a major issue to tackle the global challenge of neurodegenerative diseases.”

Proposals submitted under this call, which is open to applicants in 24 countries, must focus on Precision Medicine in one or several of the following research areas:

  • Diagnosis (e.g. biomarkers, imaging data, omics approaches, big data analyses)
  • Prevention (e.g. biomarkers for studying novel treatments and interventions, co-morbidities, digital technologies, stratification within cohort studies and clinical trials)
  • Care (e.g. improvement of social and health care systems, molecular profiling, imaging, lifestyle data)

Proposals must also relate to any or several of the following neurodegenerative diseases: Alzheimer’s disease and other dementias, Parkinson’s disease and PD-related disorders, Prion diseases, Motor Neuron diseases, Hungtington’s disease, Spinocerebellar ataxia and Spinal muscular atrophy. JPND is committed to Patient and Public Involvement, and proposals are expected to engage patients, carers and the public.

Pre-proposals must be submitted no later than 15:00h C.E.T. on March 12, 2019.

For more information about the call, please click here.

 

The EU Joint Programme on Neurodegenerative Disease Research (JPND) was established to better coordinate research efforts across countries and disciplines to more rapidly find causes, develop cures and identify better ways to care for people with neurodegenerative disease. Today more than 40 million people worldwide are estimated to be living with Alzheimer’s disease and related disorders – the most common class of neurodegenerative disease – and this figure is expected to rise in the coming decades. The JPND Research and Innovation Strategy identified research priorities and provided a framework for future investment and is available for download here.

Final call information will be published on the JPND website (www.jpnd.eu).

Moderate to high intensity exercise does not slow cognitive impairment in older people with dementia, a trial published by The BMJ finds. The view that exercise might slow cognitive decline has gained popularity, however, recent reviews of trials of exercise training in people with dementia have shown conflicting results.

A team of UK researchers decided to estimate the effect of a moderate to high intensity aerobic and strength exercise training programme on cognitive impairment and other outcomes in people with dementia. 494 people with mild to moderate dementia living in the community across 15 regions of England were involved. Participants were randomly assigned to either a supervised exercise and support programme or to usual care. The main outcome was an Alzheimer’s disease assessment score (ADAS-cog) at 12 months. Other (secondary) outcomes included activities of daily living, number of falls, and quality of life.

Compliance with exercise was good and participants were assessed again at six and 12 months. The researchers found that cognitive impairment declined over the 12-month follow-up in both groups. The exercise group showed improved physical fitness in the short term, but higher ADAS-cog scores at 12 months (25.2 v 23.8) compared with the usual care group, indicating worse cognitive impairment.

Paper: “Dementia And Physical Activity (DAPA) trial of moderate to high intensity exercise training for people with dementia: randomised controlled trial”

Reprinted by materials provided by The BMJ

 

Lifetime risks of developing Alzheimer’s disease dementia vary considerably by age, gender and the presence of any signs or symptoms of dementia, a new study by Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association reports.

These are the first lifetime risk estimates for Alzheimer’s that take into account what are believed to be biological changes in the brain that occur 10 to 20 years before memory and thinking symptoms appear. These early changes are referred to as preclinical Alzheimer’s disease.

Researchers provide the example of a 90-year-old female with amyloid plaques having a lifetime risk of Alzheimer’s disease of only 8.4 percent, compared to a 65-year-old female with amyloid plaques who has a lifetime risk of 29.3 percent. The shorter life expectancy of the older person explains the lower lifetime risk for this person over that of the 65 year old.

That same 65-year-old with amyloid plaques has a 10-year risk of Alzheimer’s disease dementia of 2.5 percent. Lifetime risks for females are generally higher than males because they live longer. The authors state that the lifetime and 10-year risks are an indication of the potential that someone will develop Alzheimer’s disease dementia based on their age and screenings for amyloid deposits, neurodegeneration and presence or absence of MCI or any combination of those three.

Paper: “Estimation of lifetime risks of Alzheimer’s disease dementia using biomarkers for preclinical disease”

Reprinted by materials provided by the Alzheimer’s Association

Launched on 1 November 2018, the European Brain Council (EBC)-coordinated EU project The European Brain Research Area (EBRA), was designed to respond to the Horizon 2020 call SC1-HCO-10-2018, entitled ‚Coordinating European brain research and developing global initiatives‘.

Aimed at reducing the fragmentation and duplication of research efforts and at fostering synergies through enhanced coordination of brain research efforts at the EU and global level, the EBRA project was created as a catalysing platform for brain research stakeholders (researchers, clinicians, patients, governments, funders and public institutions) to streamline and better co-ordinate brain research across Europe while fostering global initiatives.

The highly diversified nature of European public research represents a considerable obstacle in the European Research Area, especially in the field of brain research, where the complexity of brain imposes a coordinated research effort to advance the understanding of brain and its disorders.

The EU and its Member States have made considerable investments in brain research,  leading to a significant increase of initiatives in this area, particularly under Horizon 2020. Although these initiatives have generated considerable amounts of knowledge and innovative approaches, more coordinated efforts to identify gaps and highlight priorities are needed, to combat the complexity of the challenge.

Over the next three years, the EBRA Consortium will work to align and better coordinate research strategies across European and global brain initiatives; facilitating the emergence of research projects in specific areas in active clusters, and providing support for effective collaboration. This includes enabling the sharing of data and access to research infrastructures; increasing the visibility of the brain research portfolio as a whole and promoting the uptake of EBRA results to key stakeholders.

The Consortium consists of the EBC membership, the Network of European funding for Neuroscience research (NEURON), Joint Programme – Neurodegenerative Disease Research (JPND) and the Human Brain Project (HBP).


This project has received funding from the European Union’s Horizon 2020 Research and Innovation programme under grant agreement No 825348

The EU Joint Programme – Neurodegenerative Disease Research (JPND) will shortly launch a new cohesive action with the European Commission – a call for “Multinational research projects on Personalised Medicine for Neurodegenerative Diseases”. More than €30 million have already been earmarked by JPND member countries and the European Commission for this action.

Neurodegenerative diseases are debilitating and still largely untreatable conditions. They are characterised by a large variability in their origins, mechanisms and clinical expression. When searching for a medical solution, e.g. a treatment or an optimised approach for care, this large variability constitutes a major hurdle if not controlled. Indeed a treatment addressing one disease pathway may not be useful for all patients experiencing the relevant symptoms. Thus, one of the greatest challenges for treating neurodegenerative diseases is the deciphering of this variability.

JPND has chosen to focus in the area of Precision Medicine, which relates to the targeting of specific elements responsible for pathology in a given individual at a particular point in time. It is an emerging approach for disease prevention, diagnosis and treatment that takes into account individual variability in genes, biological/molecular characteristics together with environmental and lifestyle factors.

Thus, the upcoming call for multidisciplinary research proposals conducted by JPND and the European Commission will focus on Precision Medicine in the following research areas:

  • Diagnosis (e.g. biomarkers, imaging data, omics approaches, big data analyses)
  • Prevention (e.g. biomarkers for studying novel treatments and interventions, co-morbidities, digital technologies, stratification within cohort studies and clinical trials)
  • Care (e.g. improvement of social and health care systems, molecular profiling, imaging, lifestyle data)

The following neurodegenerative diseases are included in the call:

  • Alzheimer’s disease and other dementias
  • Parkinson’s disease and PD‐related disorders
  • Prion diseases
  • Motor neuron diseases
  • Huntington’s disease
  • Spinocerebellar ataxia (SCA)
  • Spinal muscular atrophy (SMA)

This will be a two-step call, expected to be launched in early January 2019, with a likely pre-proposal submission deadline in March 2019. Further details will be provided with the launch of the call.

Please note:

All information regarding future JPND call topics is subject to change.

Final call information will be published on the call page.

The EU Joint Programme on Neurodegenerative Disease Research (JPND) has awarded funding to ten multi-national research teams in order to increase understanding of the factors that contribute to the quality and delivery of health and social care for neurodegenerative diseases.

Current research suggests strong potential for improving quality of life for those living with neurodegenerative diseases such as Alzheimer’s disease and Parkinson’s disease, with novel health and social care concepts and innovations focusing on the preservation of dignity, independence and social inclusion. Nevertheless, the availability and quality of such services vary considerably across Europe and beyond.

JPND has selected ten teams with ambitious, innovative and multi-disciplinary collaborative projects that address health and social care at both the macro level of systems and infrastructures and the individual level of patients, carers and families.

“While waiting for new treatments to emerge from basic and translational research, we need to support projects that could deliver immediate impactful developments which health and social care research and innovation may be able to achieve. This includes new insights that point to the potential for improved patient empowerment, civic participation and quality of life,” said Professor Philippe Amouyel, Chair of JPND. Our hope is that this work will lead to the adoption of novel health promotion strategies that will reduce the impact of disease for patients as well as for their families and carers.”

The ten projects were recommended for funding by an independent, international Peer Review Panel based on scientific excellence with input from the JPND advisory board on patient and public involvement. Proposals are presented in alphabetical order according to their acronym.

Visit the call page here.

ADDITION
Alzheimer’s disease data-driven insights on individual outcomes of importance

Coordinator:
Linus Jönsson, Karolinska Institutet, Sweden

Partners:
Wiesje van der Flier, VU University Medical Center, The Netherlands
Carole Dufouil, INSERM, University of Bordeaux, France

 

COGNISANCE
CO-desiGning demeNtia dIagnoSis ANd post-diagnostic CarE

Coordinator:

Henry Brodaty, University of New South Wales, Australia

Partners:
Lee-Fay Low, University of Sydney, Australia
Isabelle Vedell, McGill University, Canada
Frans Verhey F, Maastricht University, The Netherlands
Greta Rait, University College London, United Kingdom
Louise Robinson, Newcastle University Institute for Ageing, United Kingdom
Joanna Rymaszewska, Wroclaw Medical University, Poland


DOMINO-HD

Multi-Domain Lifestyle Targets for Improving ProgNOsis in Huntington’s Disease

Coordinator:
Monica Busse, Centre for Trials Research, Cardiff University, United Kingdom

Partners:
Madeleine Lowery, Insight Centre for Data Analytics, University College Dublin, Ireland
Esther Cubo, Hospital Universitario of Burgos, Spain
Grzegorz Witkowski, Institute of Psychiatry and Neurology, Warsaw, Poland
Bernhard Landwehrmeyer, University of Ulm, Germany
Hans Jung, University of Zurich, Switzerland

FCDS Study
Scaling up the Family Carer Decision Support Intervention: A transnational effectiveness-implementation evaluation

Coordinator:
Kevin Brazil, Queen’s University Belfast, United Kingdom

Partners:
Sharon Kaasalainen, McMaster University, Canada
Jenny van der Steen, Leiden University Medical Centre, The Netherlands
Nicola Cornally, University College Cork, Republic of Ireland
Martin Loucka, Center for Palliative Care, Czech Republic

HEALTHE-RND
European eHealth care model for rare neurodegenerative diseases

Coordinator:
Jiri Klempir, Charles University in Prague, Czech Republic

Partners:

Jennifer Hoblyn, Bloomfield Hospital, Trinity College Dublin, Ireland
Ferdinando Squitieri, Huntington and Rare Diseases Unit, IRCCS Casa Sollievo della Sofferenza Hospital, Italy
Wilco Achterberg, Leiden University Medical Center, Topaz Huntington Center Overduin, The Netherlands
Niels Chavannes, Leiden University Medical Center, Department of Public Health and Primary Care, The Netherlands
Bernhard Landwehrmeyer, University of Ulm, Germany
Stephen P McKenna, Galen Research, Manchester, United Kingdom


HOMESIDE

A HOME-based Spousal caregiver-delivered music Intervention for people living with DEmentia: A Randomised Controlled Trial

Coordinator:

Felicity Baker, The University of Melbourne, Australia

Partners:
Karette Stensæth, Norwegian Academy of Music, Norway
Helen Odell-Miller, Anglia Ruskin University, United Kingdom
Thomas Wosch, University of Applied Sciences Würzburg-Schweinfurt, Germany
Anna Bukowska, University of Physical Education in Krakow, Poland


iCARE-PD

Integrated Parkinson Care Networks: addressing complex care in Parkinson disease in contemporary society

Coordinator:
Tiago Mestre, The Ottawa Hospital Research Institute / University of Ottawa, Canada

Partners:
Carsten Eggers, Philipps University of Marburg, Germany
Álvaro Sanchez-Ferro, Fundación Investigación HM Hospitales, Spain
Olivier Rascol, Toulouse University Hospital, France
Timothy Lynch, The Mater Misericordiae University Hospital, Ireland
Evžen Růžička, Charles University, Czech Republic


OPTIM-PARK

Optimization of community resources and systems of support to enhance the process of living with Parkinson’s Disease: a multisectoral intervention

Coordinator:
Maria Carmen Portillo, University of Southampton, United Kingdom

Partners:

Maria Victoria Navarta, University of Navarra, Spain
Lydia López Manzanares, Hospital Universitario de la Princesa, Spain
Christina Foss, University of Oslo, Norway
Anita Haahr, VIA University College, Denmark


SHAPE

Self-management and HeAlth Promotion in Early-stage dementia with e-learning for carers – A randomised controlled trial

Coordinator:
Ingelin Testad, Stavanger University Hospital, Norway

Partners:

Geir Selbæk, Norwegian National Advisory Unit on Ageing and Health, Norway
Linda Clare, University of Exeter, United Kingdom
Martin Knapp, London School of Economics & Political Science, United Kingdom
Kaarin Anstey, University of New South Wales, Australia


SHARED

Social Health And Reserve in the Dementia patient journey

Coordinator:
Arfan Ikram, Erasmus MC Rotterdam, The Netherlands

Partners:

René Melis, Radboud UMC, The Netherlands
Anna-Karin Welmer, Karolinska Institutet, Sweden
Henry Brodaty, University of New South Wales, Australia
Daniel Davis, University College London, United Kingdom
Karin Wolf-Ostermann, University of Bremen, Germany
Joanna Rymaszewska, Wroclaw Medical University, Poland

Did you know that there are 10 JPIs (Joint Programming Initiatives) addressing societal challenges, from climate change to neurodegenerative diseases, through coordinated research and innovation in Europe? Watch the video below, created in honour of the tenth anniversary of JPIs, to find out more about how they are tackling some of the biggest issues facing our society.