Category Archives: JPND Progress

The JPND Action Group on palliative and end-of-life care has published its report, bringing together for the first time an analysis of gaps and collation of needs and opportunities for neurodegeneration research across JPND countries.

JPND is currently investigating the available evidence and gaps in knowledge in palliative care research in the field of neurodegenerative diseases, with a view to implementing actions within the reach of its global research community.

A JPND Action Group on Palliative and End-of-Life Care met during 2014 and has reported back to JPND. The group was tasked with:

  • Analysing the nature and scale of relevant palliative and end-of-life care research initiatives among JPND member countries and EU-funded initiatives.
  • Consulting with the research community to establish the value of JPND actions.
  • Identifying the gaps within current palliative care research on ND and scoping the requirements to be considered in areas of unmet need.

Implementation of JPND actions in this area will be based on the advice in the report. These actions may include shared working across JPND member countries, funding of competitive calls, coordination of best practices and organization of transnational initiatives designed to share knowledge and provide training that does not currently exist in this research field.

The report can be downloaded at the link below.

As identified in the report, a number of implementation challenges will need to be overcome in order for JPND to support and facilitate research that informs how to shape palliative care across neurodegenerative diseases. The report also identified a number of areas where further thinking is specifically needed to provide the necessary consensus and framework to support future studies of impact for the field. These were:

  • Advance Care Planning which involves carer and family engagement in planning and decision-making over time.
  • The challenges of working with cognitive impairment in terms of communication, symptom management and end of life care.
  • The effectiveness of education + training interventions and linked competencies in practice for a range of generalist and specialist practitioners charged with the care of ND patients.
  • Engaging primary care providers (e.g. GPs, etc.) in palliative care planning.
  • Engaging with national voluntary groups and policy makers on actions and outcomes for ND

Priorities for action will be set by JPND Management Board for announcement in 2015.

The EU Joint Programme – Neurodegenerative Disease Research (JPND) has announced a EUR 30 million call for neurodegenerative disease research topped-up with EUR 10 million from the Horizon 2020 framework programme for research and innovation of the European Union.

Neurodegenerative diseases such as Alzheimer’s and Parkinson’s are a truly global challenge.  Most of these diseases remain incurable and are strongly linked with aging populations. Dementias alone affect more than 7 million people in Europe and their care is estimated to cost  EUR 130 billion a year. The challenge facing the world of diagnosing, treating and caring for people affected by neurodegenerative diseases is extremely daunting and no single country alone has the expertise or resources necessary to tackle all of the big questions in this area.

JPND was established in 2009 to enable participating EU Member States to work together on the challenge of age-related neurodegenerative diseases, in particular Alzheimer’s. In the past five years, tremendous progress has been made by JPND in terms of increasing coordination, collaboration and alignment between national research programmes and projects related to neurodegenerative diseases.  This has resulted in an unprecedented mobilization of human resources, actions, funding and awareness to tackle this problem which no country can address alone.

JPND have announced a major new cohesive action with the European Commission, entitled ‘JPcofuND’. The initiative expects to launch a joint transnational call for proposals in January 2015 aimed at supporting international research collaborations in three JPND priority areas:  Longitudinal Cohorts, Animal and Cell Models, Risk and Protective Factors. This initiative will see more than EUR 30 million coming from the JPND member countries being made available, with an additional EUR 10 million European Commission “topping up” fund.

According to Professor Philippe Amouyel, Chair of the JPND Management Board

“this unique co-funded initiative further establishes concrete synergies with Horizon 2020 to address this global threat.Thisis a significant scale-up of implementation of the JPND research strategy, and a major step forward towards the realisation of a “European Research Area” dedicated to neurodegenerative disease research – an issue central to the joint programming concept.

European Commissioner for Research, Science and Innovation Carlos Moedas said:

“The EU Joint Programming approach tackles some of the major challenges we face as a society. Thanks to this new co-funded initiative of JPND and the European Commission, top European researchers will be working together to help the millions of people who suffer from Alzheimer’s and other neurodegenerative diseases. By making research more efficient and avoiding the duplication of work, this initiative will increase the prospects of real progress in the prevention and treatment of these diseases, as well as in patient care.”

A pre-call announcement, with the indicative titles of each topic, was made recently on the JPND website.  Further detail will be provided on this page on the call launch date in January 2015.

This project has received funding from the European Union’s Horizon 2020 research and innovation programme under Grant Agreement No. 643417 – JPcofuND

Media enquiries should be directed to:

Derick Mitchell

[email protected]jpnd.eu

+353 1 442 9015

A total of fifteen international consortia have been proposed for funding under two JPND Transnational calls between a total of 18 countries.

These new projects are aiming to analyse neurodegenerative diseases across traditional clinical boundaries, and also to begin “pilot” studies for the design of preventive strategies.

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

The calls were launched in December 2013 with a pre-proposal deadline of March 2014. Sixteen countries participated in each call.

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.

Ten international working groups to be funded under JPND call

The EU Joint Programme Neurodegenerative Disease Research (JPND) has released the results of a “rapid action” call to support ten groups of leading scientists in finding ways to enhance the use of longitudinal cohort studies for neurodegenerative disease (ND) research.

JPND launched this call on 23rd April 2014 as part of a series of new JPND initiatives, designed to amplify the impact of research by aligning and building upon existing national programmes and initiatives, and to bring a more wide-ranging and multidisciplinary approach to research on neurodegenerative diseases.

The awarded proposals are for top ND scientists to come together and recommend how to address the most pressing issues that prevent full use of longitudinal cohorts. This includes population studies and disease cohorts, both having considerable potential for ND research.  Funding decisions were based upon scientific evaluation and recommendations to the ten sponsor countries by a JPND Peer Review Panel.

Awards cover a wide ND landscape (Alzheimer’s, Parkinson’s, ALS, Lewy-body and vascular dementia) and different groups will address methodological challenges for studies in a number of areas,  including cognition/functional assessment, biomarkers and biobanking, imaging, health and social outcomes and presymptomatic ND.

“The plan is that each group will push forward the conceptualization of a key challenge and derive valuable guidelines and/or best practice frameworks for the wider research community” , commented Dr. Rob Buckle, Director of Science Programmes at the UK Medical Research Council, the organisation which facilitated the call process.

According to Professor Philippe Amouyel, Chair of the JPND Management Board “this is an excellent outcome for JPND and a significant opportunity to advance the field.  A rapid and flexible JPND process is now established to achieve JPND strategic goals, here to promote harmonisation of approaches and data sharing. These outputs will accelerate the progress of future studies by the global ND community”.

Each Working Group is expected to run for a maximum of 6 months, reporting back to JPND by Q1 2015.  Looking to the future, and drawing on advice emerging from the Working Groups. JPND is likely to launch a follow-up call for full scientific applications on longitudinal cohort studies, to be received next year.

For further information on the Working Groups awards, click on the link below:

The report captures the discussions that took place at the JPND-AAL Joint Workshop, held on January 27th, 2014, at the Royal Tropical Institute, Amsterdam (Netherlands).

JPND and the Article-185 initiative – Ambient Assisted Living Joint Programme (AAL JP) are aligning priorities in the area of assisted living technologies for neurodegenerative diseases.

The main objectives of JPND–AAL JP engagement are to agree on a common research agenda, to align research priorities for neurodegenerative diseases and to determine how to implement priorities through partnership.

Relevant AAL solutions and projects were showcased during the workshop with discussions centering on the potential impact of AAL/ICT projects for people with neurodegenerative diseases from the user and market perspectives. 

At the workshop it was observed that approximately 25% of current AALJP projects are already developing solutions for the support and care of older adults with cognitive impairments/dementia and their (informal) carers. 

The workshop report as well as links to current AAL projects in the area of neurodegenerative diseases are available for download at the link below. 

The JPND Action Group on Animal and Cellular Models has published its report, providing an overview on the state-of-the-art of currently available models for neurodegeneration research across JPND countries.

A JPND Action Group was tasked with:

  • documenting the experimental models currently utilized for the study of specific neurodegenerative diseases and new therapies
  • identifying the shortcomings of the models currently available
  • identifying the need for novel models and lines of intervention

The report provides a broad panorama of the models currently available and a critical overview of their limitations, thereby suggesting lines of intervention within the reach of the JPND community that may include funding of competitive calls and organization of initiatives aimed at harmonizing research activities in this field.

Priorities for action will be set by the JPND Management Board for announcement in 2014.

The report can be downloaded at the link below:

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Bengt Winblad

JPND Communications interviewed Bengt Winblad, coordinator of the JPND-supported BIOMARKAPD project

After a decade of disappointing drug trials, European researchers are finding new ways to understand Alzheimer’s and Parkinson’s disease, just in time for the anticipated “tidal wave” of cases.

With worldwide cases expected to triple by 2050, it is widely accepted that early diagnosis of Alzheimer’s and Parkinson’s disease will be vital to tackling these neurodegenerative diseases. The goal of new clinical trials in this area will be to treat early-stage patients with drugs that inhibit the destructive process before too many neurons have been lost. However, as the clinical symptoms in these early stages may be very subtle, or even absent, the tools currently used to diagnose these diseases cannot be relied upon for these new trials.

According to Bengt Winblad of the Karolinksa Institutet in Sweden “research tells us that instead of the current tools, we could use biomarkers to determine if someone has Alzheimer’s or Parkinson’s”. Ranked by the Journal of Alzheimer’s Disease as the world’s most prolific Alzheimer’s researcher, Winblad is coordinating one of the largest international collaborative projects ever undertaken in this area. The goal of the 3-year “BIOMARKAPD” project is to standardize Alzheimer’s and Parkinson’s biomarker measurements across Europe. Supported by 19 different countries under the JPND initiative, the project results are predicted to transform the entire field of neurodegenerative disease research – leading to more definitive diagnosis, greater ability to measure disease progression and better assessment of new treatments.

“Nuts-and-bolts” science
Established biomarkers exist for early Alzheimer’s and promising candidates are underway for early Parkinson’s. However, a major problem today is the large variation that exists in biomarker measurements between different studies, centres and laboratories, which seriously jeopardizes their introduction into both clinical routines and clinical trials around the world. Standardizing biomarker measurements across Europe is a tricky business, and first requires standardized protocols on how to collect clinical samples from patients, how to perform the measurements and how to interpret the results. It is the veritable ‘nuts-and-bolts’ science – unglamorous but essential. However, such is the anticipated impact of the project results that world-leading laboratories from 21 countries (including Canada) are signed up to implement the BIOMARKAPD protocols.

Speaking at the project’s most recent general assembly in Barcelona, Winblad firmly believes that the resulting standards will have a major influence on clinical research and drug development for neurodegenerative conditions in general and for Alzheimer’s and Parkinson’s in particular. The active involvement of all European JPND countries in the project not only provides enormous expertise, but also ensures that protocols developed can be applied by all the member states” he says.

New Biomarkers
Whereas BIOMARKAPD is focusing on existing biomarkers in the spinal fluid of patients with Alzheimer´s or Parkinson´s disease, the project will also support the development of new promising biomarkers through a central and a virtual biobank, located in Luxembourg. IBBL (Integrated BioBank of Luxembourg) will contain samples from Alzheimer’s and Parkinson’s patients, including patients in very early disease stages, as well as healthy controls. The project will look to make these samples available to the scientific community to conduct field-changing research such as developing new assays and testing new biomarker candidates.

Why has this not happened until now?
The development and standardization of biomarkers typically demands significant financial and intellectual resources, and for individual research groups it does not offer the short-term rewards and long-term competitive advantage often used to assess decisions to commit resources. “In light of the urgent need for optimized and standardized Alzheimer’s and Parkinson’s biomarkers and the ambitious goal of BIOMARKAPD to meet that need, it is fitting that multiple partners mobilize under the JPND umbrella, and through a coordinated effort, share the expense, risk and, ultimately, the benefits of the research”, says Winblad. The JPND is well-positioned to lead the push and marshal the necessary resources to make projects like this a reality”, he said.

With Winblad at the helm, BIOMARKAPD seems to be well on its way to achieving its goals.

* This interview was originally published in the January 2014 issue of Dementia in Europe magazine, published by Alzheimer Europe.

Read more about the BIOMARKAPD project here.

 

The JPND Action Group on longitudinal cohort studies has published its report, bringing together for the first time the wealth of cohort opportunities for neurodegeneration research across JPND countries.

JPND is currently investigating potential actions for both disease-based and population-based longitudinal cohort studies, whereby current member state-led or European Commission-supported activities can be expanded or better exploited, or new activities identified.

A JPND Action Group on Longitudinal Cohort studies in Neurodegeneration Research met during 2013 and has reported back to JPND.  The group was tasked with:  

  • Taking stock of current longitudinal cohort studies for both ND-based and general population studies of relevance
  • Determining how JPND adds value to existing cohort investments
  • Identifying gaps and cases for new activity in areas of unmet need
  • Scoping the emerging scientific opportunities

The report spans general population-based, targeted (preclinical) and disease-focused cohorts. Valuable information that is immediately accessible include:

  • analyses of longitudinal and disease cohort studies
  • an analysis of imaging studies
  • a cohort reference list with web links

The information provided on imaging and in the reference list represents a snapshot of what was available to the Action Group during 2013. Whereas the listings aim to be as comprehensive as possible, JPND is requesting that any studies omitted from the list should contact JPND ([email protected]) with their information, which will be added when the lists are updated.       

Implementation of JPND actions in this area will be based on the advice in the report. The options for implementation are based on an analysis of the opportunities presented by current European longitudinal cohort capability as well as comparison with selected international studies. Recommendations span coordination, funding and policy areas. Priorities for action will be set by JPND Management Board for announcement in 2014.

The report can be downloaded at the link below:  

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