Yearly Archives: 2013

A total of eleven international consortia have been proposed for funding under two JPND Transnational calls between a total of 20 countries

These new projects are aiming to increase understanding of the factors that put people at risk of developing neurodegenerative diseases such as Alzheimer’s, and also to evaluate health and social care strategies for people living with these debilitating illnesses.

The projects are supported under two JPND transnational calls for proposals entitled

  • “A call for European research projects for the identification of genetic, epigenetic and environmental risk and protective factors for Neurodegenerative Diseases“
  • "A call for European research projects for the evaluation of health care policies, strategies and interventions for Neurodegenerative Diseases”

The calls werelaunchedin December 2012 between 19 and 14 countries respectively, with a proposal deadline of March 2013. 

The project proposals have been proposed for funding by the respective Peer Review Panels based on scientific evaluation and by the respective Call Steering Committees based on budget availability.

For further information on the projects proposed for funding, click on the links below.

The European Medicines Agency has released a draft guideline on the clinical investigation of medicines for the treatment of amyotrophic lateral sclerosis (ALS) for a six-month public consultation.

The document focuses on the design of studies for medicines that have an impact on the course of the disease (disease-modifying treatments) as well as medicines that treat the symptoms of ALS. Guidance is provided on the choice of meaningful outcome parameters used in studies and the clinical relevance of functional tests of disability, including motor- and respiratory-function tests and their relationship to survival. 

For more information, click on the link below:

Representatives of industry and patient organisations have joined the JPND Scientific Advisory Board

Since 2010, the JPND Scientific Advisory Board (SAB) has been delivering independent, strategic advice to the JPND Management Board for:

  • the establishment of its Strategic Research Agenda (SRA)
  • the ongoing implementation of priorities identified in the strategy
  • future strategy revision and stakeholder engagement

Members of the SAB provide recognised leadership across the three JPND thematic areas – scientific, medical and social/policy, including public health.

Recognising the importance of JPND engagement with its stakeholders, the SAB membership was recently expanded to provide scientific leadership from two major JPND stakeholder groups – industry and patient organisations.

JPND is delighted to announce that the following candidates have accepted invitations from JPND to join the membership of the SAB:

Representatives of Industry

  • François Nicolas, Director of Neurology PET MDx, GE Healthcare
  • Thomas Rooney, Head of Translational Research, Neurodegenerative Diseases Group, Sanofi

Representatives of Patient Organisations

  • Brian Fiske, Vice President of Research Programs, Michael J. Fox Foundation for Parkinson’s Research, USA
  • Charles Scerri, University of Malta and Honorary Secretary, Alzheimer Europe
  • Eric Karran, Director of Research, Alzheimer’s Research UK

A new report from the International Longevity Centre (ILC) and Personal Finance Research Centre (PFRC), presents analyses exploring financial dimensions of wellbeing and other quality of life measures concerning older age.

The report was published as part of the Economic and Social Research Council’s Secondary Data Analysis Initiative (ESRC SDAI).

Data was derived from the “Understanding Society” social survey, which investigated the oldest old (i.e. people aged over 85) and their levels of health, wellbeing and participation.

The PFRC and ILC-UK plan to continue their analysis of Understanding Society, concerning aspects of financial wellbeing in particular.

For more information, click on the link below:

Five new innovative pathfinder projects are being funded under the JPND-aligned CoEN initiative

The Centres of Excellence in neurodegenerative disease (CoEN) initiative, launched in 2010, funds collaborative research in the field of neurodegenerative disease, spanning disorders such as Alzheimer’s, Parkinson’s and Motor Neurone Disease.

Under the second CoEN funding call, €3.0m has been awarded for5 “Pathfinder” projects, constituting innovative and creative proof-of-principle studies which, if successful, will provide a step change in neurodegeneration research.

The awarded projects take a ‘high risk, high pay-off’ approach to identify and validate new potential drugs and develop innovative therapeutic approaches for Parkinson’s Disease, Alzheimer’s Disease and other dementias. These projects bring together a wealth of resources and expertise from a number of research centres in different countries to tackle scientific questions that are vital to advancement within the field.

To ensure momentum, successful “pathfinders” will have the potential, in subsequent phases of the initiative, to win substantial follow-on funding that will help take the proof of principle studies to the next stage where they can have wider scientific and clinical impact.  

The funded projects are:

1. Targeting glucocerebrosidase for disease-modifying treatments in Parkinson’s disease
Anthony H.V. Schapira (UK), David Park (Canada), Donato Di Monte (Germany) and Fabio Blandini (Italy)

2. WNT signaling: biomarker and target evaluation in Alzheimer’s disease
Antonio Cuadrado (Spain), James Woodgett (Canada) and Simon Lovestone (UK)

3. Mechanisms of amyloid-beta clearance in models of vascular cognitive impairment and mixed dementia
Gabor Petzold (Germany) and Danica Stanimirovic (Canada)

4. In vivo neuronal cell reprogramming for a new regenerative approach in Parkinson’s disease
Vania Broccoli (Italy), Alexander Dityatev (Germany) and Josè Luis Lanciego (Spain)

5. microRNA as novel therapeutic targets and disease biomarkers in Alzheimer’s Disease, Frontotemporal dementia and Amyotrophic lateral sclerosis (NEURO-MIR)
Jochen Prehn (Ireland), Andre Fischer (Germany), Pierre Lau (Flanders), Jose Lucas (Spain)

CoEN is an international initiative involving research funders in the UK (Medical Research Council), Canada (Canadian Institutes of Health Research), Germany (DZNE), Belgium (Flanders, VIB), Ireland (Science Foundation Ireland and Health Research Board), Italy (Ministry of Health), Slovakia (Slovak Ministry of Education, Science, Research and Sport), and Spain (ISCIII). The aim of the initiative is to encourage collaborative research between recognised national centres of excellence in neurodegeneration research. COEN is aligned with JPND, although it operates as an independent entity.

For further information please visit the links below:  

Results from two major cohort studies reveal that the number of people with dementia in the UK is substantially lower than expected because overall prevalence in the 65+ age group has dropped.

The two studies provide the first estimate of the change in the number of people living with dementia in the UK. The results indicate that overall prevalence has gone down by 1.8 per cent to an estimated 6.5 per cent of the population. Using the current age profiles of the UK this corresponds to an estimated 670,000 people over the age of 65 living with dementia, a reduction of more than 20 per cent in the number of people projected to have dementia today compared with 20 years ago.

Three geographical areas in Newcastle, Nottingham and Cambridgeshire from the initial MRC Cognitive Function and Ageing Study (CFAS) examined levels of dementia in the population. The latest figures from the follow up study, CFAS II, show that there is variation in the proportion of people with dementia across differing areas of deprivation, suggesting that health inequalities during life may influence a person’s likelihood of developing dementia.

The study was led by Professor Carol Brayne from the Cambridge Institute of Public Health at Cambridge University. She said: “This study provides compelling evidence of a reduction in the prevalence of dementia in the older population over two decades. Whether or not these gains for the current older population will be borne out in later generations would seem to depend on whether further improvements in primary prevention and effective health care for conditions which increase dementia risk can be achieved, including addressing inequalities.”

The full results of the study are published online in The Lancet on Tuesday 16 July and are available for download at the link below.

(Article modified from MRC press release)

The most recent findings have been published from the TRACK-HD study, designed to create an unprecedentedly detailed map of changes in prodromal and early Huntington’s disease.

The latest findings from the TRACK-HD study are published in The Lancet Neurology and could be used to assess whether potential new treatments are slowing the disease up to 10 years before the development of noticeable symptoms.
“Currently, the effectiveness of a new drug is decided by its ability to treat symptoms," says lead author Professor Sarah Tabrizi. "These new tests could be used in future preventative drug trials in individuals who are gene positive for HD but are not yet showing overt motor symptoms.
"These people have the most to gain by initiating treatment early to delay the start of these overt symptoms and give them a high quality of life for a longer period of time."

Read Francis Walker’seditorial in The Lancet Neurology.

Direct link to study results available at the link below:

Older people with Alzheimer’s disease are less likely to also have cancer, and older people with cancer are less likely to also have Alzheimer’s disease.

This is according to a study published in Neurology on 10 July 2013.

The study of 204,468 Italian people aged 60 and older found that over six years, 21,451 people developed cancer and 2,832 people developed Alzheimer’s disease. 161 people had both cancer and Alzheimer’s. That number would have been expected to be 281 for cancer and 246 for Alzheimer’s.

This means the risk of cancer was cut in half for people with Alzheimer’s disease and the risk of Alzheimer’s disease was reduced by 35 per cent for people with cancer.

Direct link to the study available below:

Leading Portuguese experts and policy makers met in Lisbon on July 11th to discuss future research directions and collaborations for neurodegeneration research

Portuguese representatives from the JPND Management Board recently organised a meeting on July 11th 2013 in Lisbon, to discuss implementation of the JPND Strategic Research Agenda.

The meeting was organised by FCT (Fundação para a Ciência e a Tecnologia), to discuss future research directions and collaborations among relevant national stakeholders including:

  • Ministry of Health and Ministry of Science, PT
  • Groups responsible for planning national strategies related to neurodegenerative diseases (ND)
  • Groups involved in ND-related projects such as "Mapping Dementia in Portugal"
  • Groups supporting social activities dedicated to Alzheimer’s Disease 
  • Stakeholder organizations representing patients, industry, research centers & universities 
  • Other relevant pan-European research initiatives (SHARE-ERIC, EIP-AHA and AAL)

A scientific session in the afternoon involved Portuguese researchers from successfully-funded JPND consortia as well as representatives from relevant national research networks.

JPND was representated at the meeting by Management Board member Maria dos Anjos Macedo.

The draft programme for the meeting (in English and Portuguese) is available for download at the link below:

Presentations delivered at the event will be available shortly on the FCT website link below: 

MEPs set to draft written declaration aimed at improving the quality of life of people living with chronic degenerative brain diseases

The pledge to table a written declaration was unveiled by Austrian ALDE deputy Angelika Werthmann at an event in the European parliament on Tuesday July 9th and is expected to be drawn up after MEPs return from their summer break in September.

Werthmann, a vocal campaigner on issues surrounding neurodegenerative diseases, told participants that the increasing prevalence of people suffering from conditions such as Parkinson’s disease, Alzheimer’s and multiple sclerosis highlighted the need for both national and EU policymakers to provide sufferers with "better opportunities within Europe".

Increasing awareness, workplace adaptations and early diagnosis can help lessen the impact of neurodegenerative diseases, as well as reducing healthcare costs, allowing people to, "remain as active as possible in the workplace", said Werthmann.

The three co-organisers of the event, the European multiple sclerosis platform, Alzheimer Europe and the European parkinson’s disease association outlined four key actions that they believe will help people remain employed:

  • raising awareness through education and training of employers and colleagues
  • adapting social legislation to offer better protection
  • work place adaptations – allowing people to work with their remaining competencies
  • early access to diagnosis and treatment that would allow people to remain professionally active for longer

More information available at the link below: