Yearly Archives: 2021

On 27 th May 2021, JPND held a virtual workshop at the annual Dementia Forum X where participants gathered ideas and insights from the world’s leading researchers, policy makers and stakeholders in the field of dementia.

Titled Patient and Public Involvement in Research (PPI), the workshop introduced JPND and its PPI journey. JPND Chair, Professor Philippe Amouyel, kickstarted the workshop with a brief introduction on JPND, its goals and its longstanding engagement in PPI. Under the expertise of Professor Mogens Hørder, JPND’s management board member and representative of member state Denmark, JPND developed a concrete strategy for the implementation of PPI in 2015. Implemented as a learning process and in parallel with JPND’s annual calls, offering the best platform to showcase PPI, researchers are able to truly understand what PPI in research means and how to handle PPI in research.

Moderated by Richard Andersson, JPND’s management board member and representative from the Swedish Research Council and Alexandra Rodrigues, JPND’s representative from Innovation Fund Denmark, the workshop was capped and attended by 50 participants and many more who showed up to listen. JPND took this opportunity to showcase two pre-recorded interviews by PPI expert Professor Mogens Hørder, and Mr Chris Roberts, Chairperson for the European Working Group of People with Dementia under Alzheimer Europe and Ms Jayne Goodrick, member of the Carers Advisory Panel for Dementia Carer Counts.

Professor Hørder talked about the importance and value of PPI in research (click here for his interview) and Mr Chris Roberts and Ms Jayne Goodrick shared their personal experiences of living with dementia as a patient and a carer (click here for their interview) respectively. Guest speaker and Vice-Chair of the JPND Scientific Advisory Board, Professor Martin Rossor, discussed the concept of “patient” in PPI. He also emphasised the need to take into account participants‘ former experiences when engaging in PPI.

Through both live and chat sessions, participants engaged with one another and posed questions ranging from what should be done and avoided to ensure an enriching and meaningful PPI experience in dementia research for both patients and researchers; how and when clinicians can match and mediate interactions between patients and researchers, to how researchers and patients can be guided and trained on the formal and informal aspects of PPI.

The workshop was a success in creating greater awareness to JPND’s engagement of PPI in research and providing participants and stakeholders a platform to connect, and share their views about PPI’s best practices.

PARIS–(BUSINESS WIRE)–JPND is inviting multi-national research teams to submit proposals aimed at identifying and measuring physiological effects and related biomarkers that can be linked to the development of neurodegenerative diseases.

Neurodegenerative diseases are debilitating and largely untreatable conditions that are strongly linked with age. Worldwide, there are estimated to be 47 million people suffering from Alzheimer’s disease and related disorders. This figure is expected to double every 20 years as the population ages. The development of efficient treatments for most neurodegenerative diseases is hindered by the fact that their detection intervenes at late stages by which time the integrity of the nervous tissue has been compromised. Poorly characterised early physiological disturbances known to appear before unambiguous symptoms of each neurodegenerative disease are detected. These changes may include, among others, the disruption of sleep, olfaction, hearing, vision, metabolic factors as well as social engagement. All these signs have the potential to be used as early indicators of later diseases, and in most cases, are measurable in natural daily life environments. Hence, the identification of the circuits and molecular pathways being affected might reveal promising targets for early interventions and therapies for neurodegenerative diseases.

In this context, JPND announced a new joint transnational call inviting multi-national research teams to submit proposals for ambitious, innovative and multi-disciplinary collaborative projects that aim at the detection, measurement and understanding of early disease indicators related to neurodegenerative diseases, with potential for the development of new diagnostics or interventions.

Professor Philippe Amouyel, Chair of the JPND Management Board says, “One of the major limitations of neurodegenerative diseases is their sneaky sub-clinical course that can last for years before the first symptoms appear. Very often, clinicians have noticed a posteriori that these symptoms had been preceded many years before by disturbances of major physiological functions. Thus bringing together research forces in Europe and beyond through JPND will allow us to better understand the pathophysiological mechanisms of the appearance of neurodegenerative diseases. In addition, this will help to identify early indicators of their occurrence before the neuronal potential is too altered, facilitating the implementation of treatments.”

Proposals submitted under this call, which is open to applicants in 22 countries, must focus on one 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, Huntington’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.

Proposals must also focus on one or several of the following research areas:

  • Demonstrating the relationship between early neurodegenerative processes and physiological disturbances,
  • Applying cutting-edge methods or technologies to improve the detection of early symptoms,
  • Human or animal studies to decipher the neurodegeneration-derived processes causing early disease-specific signatures,
  • Using digital technologies to link recognisable symptoms to physiological changes associated to neurodegeneration,
  • Relating prognostic signs of disease with real-life measurement of physiological disturbances using home-monitoring and/or wearable devices, including wireless sensors for patient monitoring.

Pre-proposals must be submitted no later than 15:00h C.E.T. on March 2, 2021.

For more information about the call, please click here.

 

A CALL FOR LINKING PRE-DIAGNOSIS DISTURBANCES OF PHYSIOLOGICAL SYSTEMS TO NEURODEGENERATIVE DISEASES

The EU Joint Programme – Neurodegenerative Disease Research (JPND) initiative has announced an €19 million transnational call for multinational research on linking pre-diagnosis disturbances of physiological systems to neurodegenerative diseases.

Neurodegenerative diseases are debilitating and largely untreatable conditions that are strongly linked with age. Worldwide, there are estimated to be 47 million people suffering from Alzheimer’s disease and related disorders, the most common class of neurodegenerative diseases. This figure is expected to double every 20 years as the population ages. The total direct and informal care costs of Alzheimer’s, Parkinson’s and related disorders are in the range of €105-160 billion per year across the European Union and about US$ one trillion worldwide. Existing treatments for neurodegenerative diseases are limited in effect and mainly address the symptoms rather than the cause or the progressive course. In this context, the EU Joint Programme – 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 diseases.

The development of efficient treatments for most neurodegenerative diseases is hindered by the fact that their detection intervenes at late stages by which time the integrity of the nervous tissue has been compromised. Poorly characterised early physiological disturbances known to appear before unambiguous symptoms of each neurodegenerative disease are detected. These changes may include, among others, the disruption of sleep, olfaction, hearing, vision, metabolic factors as well as social engagement. All these signs have the potential to be used as early indicators of later diseases, and in most cases have the advantage that they are measurable in natural daily life environments. Since some of these changes are very likely early indicators of nervous system dysfunction, the identification of the circuits and molecular pathways being affected might reveal promising targets for early interventions and therapies for neurodegenerative diseases.

In this context, JPND announced today a new joint transnational call inviting multi-national research teams to submit proposals for ambitious, innovative and multi-disciplinary collaborative projects that aim at the detection, measurement and understanding of early disease indicators related to neurodegenerative diseases, with potential for the development of new diagnostics or interventions.

One of the major limitations of neurodegenerative diseases is their sneaky sub-clinical course that can last for years before the first symptoms appear. Very often, clinicians have noticed a posteriori that these symptoms had been preceded many years before by disturbances of major physiological functions. Thus bringing together research forces in Europe and beyond through JPND will allow us to better understand the pathophysiological mechanisms of the appearance of neurodegenerative diseases. In addition, this will help to identify early indicators of their occurrence before the neuronal potential is too altered, facilitating the implementation of treatments.” says Professor Philippe Amouyel, Chair of the JPND Management Board.

Proposals submitted under this call must focus on one 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, Huntington’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.

In addition, proposals must focus on one or several of the following research areas:

  • Demonstrating the relationship between early neurodegenerative processes and physiological disturbances, e.g. by analysing existing cohorts and longitudinal data.
  • Applying cutting-edge methods or technologies to improve the detection of early symptoms, e.g. by establishing innovative biomarkers and increasing the sensitivity, specificity and/or the robustness of the readouts.
  • Human or animal studies to decipher the neurodegeneration-derived processes causing early disease-specific signatures, e.g. on the neuropathological, cellular, synaptic, metabolic or inflammatory level. The use of well-characterised human cohorts’ data is encouraged.
  • Using digital technologies to link recognisable symptoms to physiological changes associated to neurodegeneration, e.g. by combining clinical, neurophysiological, biochemical, imaging and psychological data.
  • Relating prognostic signs of disease with real-life measurement of physiological disturbances using home-monitoring and/or wearable devices, including wireless sensors for patient monitoring.

Pre-proposals must be submitted no later than 15:00h C.E.T. on March 2, 2021.

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).