Author Archives: jpnd

Professor Leonard Van Den Berg, coordinator of the JPND-supported SOPHIA project, gave a brief insight into current progress on this biomarker project

Read more about the SOPHIA Project here. 

What are your key project achievements to date?

At this moment, the key project objective is to finalise development of the web-based platform including a virtual biobank to integrate the core clinical dataset from patients from all participating centres with biomarker data obtained from different biosamples. The core clinical dataset has been defined and the required fields for data collection of neuropathology biomarkers, wet biomarkers (in CSF, blood) and imaging biomarkers (MRI, MUNIX) are being set up. Standard Operating Procedures (SOPs) for sample collection and biomarker measurement have already been developed for some of the biomarkers. Other SOPs are still work in progress using the results from variability and reliability analysis on small sample datasets. The SOPs will also include a monitoring and quality control mechanism. Longitudinal data will be collected and analysed once the system is up and running. In the future new biomarkers can be quickly optimized and/or harmonized using a standard approach, if required.

Recently it became clear that the Edinburgh Cognitive and Behavioural ALS Screen (ECAS) would be an excellent addition to the core clinical dataset that is collected from ALS patients: Collecting longitudinal reliable neuropsychology data would be useful to detect the specific profile of cognition and behaviour changes in ALS and to differentiate it from other disorders. Using the SOPHIA consortium, developers of ECAS are able to roll out and validate the screen throughout Europe within a short timeframe. The establishment of a consortium like SOPHIA has been instrumental to this effort, and will be just that for future biomarkers.

Where is the SOPHIA consortium making a real difference?

The European ALS community has established an active consortium ( www.ENCALS.eu) which holds several 2-3 day workshops per year among others about European collaboration on databases/biobanks, molecular biomarkers, and neuroimaging, and members have generated a series of consensus statements and standard operating procedures for biomarkers. These types of initiatives are an excellent foundation for European collaboration but more focused projects and funding is required for larger international collaborations to obtain the numbers of samples necessary to perform large biomarker validation studies in ALS and other motor neuron diseases. This is where the SOPHIA consortium is making the difference, as the results of its works will be a common European strategy for the prioritization and selection of candidate biomarker domains for optimization and harmonization and a permanent interactive European ALS biomarker tool for all researchers to enable optimization/harmonization of novel biomarkers using an integrated and robust pan-European ALS methodology.

In your opinion, what is the added-value of JPND support for this project?

The benefit of JPND support for the SOPHIA project lies in communication of project results to the wider ND disease society, which is essential for sharing all methods, database, biomarker essays, and biomarkers in SOPHIA with other members of the scientific community devoted to ALS and to other neurodegenerative diseases. The concept of this project (pan-European SOPs) can be expanded to other neurodegenerative disease areas resulting in a driving force for shared biomarker research.

What has been your experience of this research collaboration to date?

One year into the project it is very clear that this is a group of highly motivated investigators, keen to set up a platform to promote biomarker research for neurodegenerative diseases. All involved feel this can only be truly accomplished at a European level and are therefore eager to collaborate. Each partner in the project is actively involving his/her colleagues in order to make sure they have the right people working on each of the different sub-projects. This has been very helpful in progressing the tasks that the consortium has set itself and will result in deliverables of high standard.

The SOPHIA project website is available at http://www.sophiaproject.eu

JPND is collaborating with the Ambient Assisted Living Joint Programme on Sept. 25th at the 2013 AAL Forum, in Norrköping, Sweden

Assisted living technologies such as ICT/smart technology offer enormous potential in the development of effective measures for prevention, intervention and care for people with neurodegenerative diseases and their carers.

To join forces and align priorities in this area, JPND and the Article-185 initiative – Ambient Assisted Living Joint Programme (AAL JP), are working together towards developing recommendations for joint actions in the area of assisted living technologies for neurodegenerative diseases.

A JPNDAlignment Action Group, containing members of both initiatives, is working to identify where JPND and AAL JP priorities and activities can be aligned, or new activities identified, and is organising actions to bring together important stakeholders in this area including users, academia, small businesses and the ICT and service industries.

The Action Group is organising a session entitled “AAL & JPND: Partnering to meet needs in the area of neurodegenerative diseases/dementia”, at the 2013 AAL Forum in Norrköping, Sweden, at 11am on Sept. 25th.  The Forum is the annual platform for the ever-increasing European AAL community to meet and discuss topics relevant for improving the AAL JP as well as the adoption of AAL solutions in the market.

In this session information will be presented about JPND, on relevant AAL solutions (showcasing some AAL projects) followed by discussions on their potential impact as well as the way forward.

A JPND poster has been designed to promote the session at the Forum.  The poster can be viewed at the filelink below.

For further information on the 2013 AAL Forum, click on the links below.

Two studies recently released provide more insight into diagnosing and treating Parkinson’s disease.

One emerging area of study focuses on how the build-up of proteins in the brain may lead to neurodegenerative diseases. Interactions between two of those proteins, amyloid and tau, may distinguish Parkinson’s disease from other degenerative brain diseases like Alzheimer’s. This research is part of the Parkinson’s Progression Markers Initiative, a global research project to better understand the disease sponsored in part by the Michael J. Fox Foundation for Parkinson’s research.

The other study, published in the journalNature Neuroscience, found that an anti-cancer compound protected dopamine-making neurons from death in a mouse model, and also prevented behavioral abnormalities similar to those seen in Parkinson’s disease.

For more information, click on the links below:

Selected recent reviews on research areas relevant to JPND

Click on the title to access the full article DOI:

Epidemiology of Alzheimer’s disease and other forms of dementia in China, 1990–2010: a systematic review and analysis (The Lancet)

Prevalence Studies of Dementia in Mainland China, Hong Kong and Taiwan: A Systematic Review and Meta-Analysis (PLoS One)

The state of US health, 1990-2010: burden of diseases, injuries, and risk factors (Journal of the American Medical Association)

Prevalence of Dementia in Japan: A Systematic Review (Dementia and Geriatric Cognitive Disorders)

As part of their work to foster further collaboration and facilitate innovation in neuroscience, the Nansen Neuroscience Network are currently working to create an overview of all dementia-related medical research and development in Norway.

The Nansen Neuroscience Network are, in collaboration with leading researchers and other players, writing a report about the research activities that are taking place in universities and hospitals, as well as in industry.

Their ambition is that the report will make a clearer picture of the potential in Norwegian dementia research and stimulate new collaborations between scientists and between academia and industry.

For more information, click on the link below:

University of Leicester experts discovered that the activity of glutathione peroxidase, a key antioxidant in cells, improves symptoms of Huntington’s disease in models of the disease.

Researchers used models such as baker’s yeast, fruit flies, and cultured mammalian cells. Their study was published in Nature Genetics on 25 August, 2013.

For more information, click on the links below:

The structure of Portugal’s National Dementia Plan has been submitted to the Ministry of Health for approval.

The submission follows a May 2013 meeting, where a group of dementia experts persuaded the government that existing dementia prevalence figures are sufficiently accurate to allow the next phase of the plan to proceed right away. The group put forward a prevalence figure of 160,000 people with dementia in Portugal, which negated the need for a dedicated epidemiological study – an expensive and lengthy process.

The group included psychiatrists, neurologists, general practitioners, researchers, members of the municipalities and representatives of Alzheimer Portugal. Their work was coordinated by Prof Joel Menard, an architect of the original French Alzheimer Plan.

The next phase of the national plan is a study to determine the needs of people with dementia. This study is already prepared and can begin very quickly. It will begin in the north of Portugal and will return results within six to nine months According to Álvaro de Carvalho, the Coordinator of the National Mental Health Programme, the rest of the country will follow in turn. 

For more information, click on the link below:

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