PROJECTS & INITIATIVES
EBC is currently involved in the following projects:
European Brain Research Area (EBRA)
EBC Project Leader: Dr. Giovanni Esposito
Project website: ebra.eu
Coordinated by EBC, EBRA enhances coordination and collaboration among members that share the common goal of understanding the brain and its disorders by synergising brain related projects and initiatives at both European and global level, addressing gaps, supporting data sharing and access, and enabling the translation of research breakthroughs into innovations and health interventions, with the final aim to achieve critical mass and economies of scale.
The highly diversified nature of European public research, defined as an area of “shared” policy responsibility between individual countries and the Commission, represents a considerable obstacle in the European Research Area. In this context, EBRA was created as a catalysing platform for the 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 project began on 1 November 2018.
MULTI-ACT: A Collective Research Impact Framework and multi-variate models to foster the true engagement of actors and stakeholders in Health Research and Innovation.
EBC project leader: Dr. Giovanni Esposito
Project website: multiact.eu
The EU-funded MULTI-ACT project aims to increase the impact of health research on people with brain diseases. It will create and implement a new model allowing for the effective cooperation of all relevant stakeholders. This will be applicable in defining the scope of health research as well as new metrics for the evaluation of its results. The MULTI-ACT project will work with patient associations, academics, private stakeholders and the public to develop brand new tools to assess the value of research. It will be assessed from four different aspects: stakeholder agenda, scientific excellence, economic efficiency and social impact. The project kicked off in May 2018.
Project websites:www.aetionomy.eu & www.imi.europa.eu/content/aetionomy
EBC project leader: Dr Mary Baker, Frederic Destrebecq
AETIONOMY is a consortium brought together under the European IMI to tackle the problem of the classification of neuro-degenerative diseases. Revising the taxonomy (classification) will take many years to complete and to be accepted by the biomedical community. AETIONOMY is the first step on this journey.
EBC is an associated partner with a role to provide strategic advice and contribute to the work of legal and ethical board.
EBC past projects:
Project website: www.advance-hta.eu
EBC project leader: Jean Mossman, Dr Mary Baker
ADVANCE-HTA is a research project funded by the European Commission’s Research Framework Programme (FP7). It comprises several complementary streams of research that aim to advance and strengthen the methodological tools and practices relating to the application and implementation of Health Technology Assessment (HTA). It is a partnership of 13 Consortium members led by the London School of Economics – LSE Health.
The EBC role is to provide a patient/patient organisation perspective to the research. EBC’s primary role is in relation to WP4, HTA and quality of life measurement.
Project website: www.maratoneresearch.eu
EBC project leader: Frederic Destrebecq, Tadeusz Hawrot
MARATONE is a Marie Curie Initial Training Network project that directly addresses the need for high-level training and career pathways in mental health to increase the inter-sectorial and trans-national employability of young scientists in the academic, public and private sectors to meet the enormous challenge of the 2009 EU Parliament Resolution on Mental Health. The Resolution set out recommendations for a comprehensive and integrated mental health strategy for Europe. MARATONE is designed to address the biggest challenge to implementing this ambitious strategy: the lack of training for career pathways for young scientists in multidisciplinary mental health research.
EBC is one of the projects associated partners with an advisory role.
Project website: www.nerri.eu
EBC project leader: Dr David Nutt, Frederic Destrebecq, Tadeusz Hawrot
Science and technology advances rapidly. The NERRI project works to establish productive dialogue between potential users, potential “designers” (researchers, engineers, developers) and potential legislators of Neuro-Enhancement technologies, before products start to hit the marketplace. The aim is to ensure that that technological research and innovation proceeds in ethically acceptable and socially desirable directions. Beyond facilitating this dialogue NERRI will also put forward policy recommendations for the governance of neuro-enhancement technologies.
EBC is a full partner in the Consortium with the role of providing strategic and operational advice on all aspects of the work including civil society engagement; the mobilisation of scientists and commercial sector companies (pharmaceutical and devices) and patient groups, and communication and dissemination.
The Oxford Participation And Activities Questionnaire Initiative (Ox-PAQ)
EBC project leader: Dr Mary Baker
The Oxford Participation and Activities Questionnaire Initiative aims to develop a short patient reported outcome measure designed specifically to assess participation, activities and level of independence. The intention is to develop a short measure which will assess (i) the ability of individuals to engage in activities (such as work, hobbies, daily routines), and (ii) the level of dependency an individual has on others.
In the Ox-PAQ project EBC is bringing together the project partners led by the University of Oxford.
Ox-PAQ Update No11, December 2015
See previous updates on the Ox-PAQ
EBC project leader: Dr Joseph Maria Haro
ROAMER is a three-year project funded by the European Commission, under the Seventh Framework Programme, to create a coordinated road map for the promotion and integration of mental health and well-being research across Europe, based on a common methodology and conceptual framework that covers the full spectrum of biological, psychological, epidemiological, public health, social and economic aspects of mental health and well-being.
ROAMER combines a consortium of renown mental health research scientists, with a methodologically sound, pragmatic and comprehensive approach with an extensive stakeholder involvement.
Paradise was an EU funded project under the Seventh Framework Programme (FP7). The objective of PARADISE was to develop and test an innovative approach to collect clinical data on the psychosocial difficulties that people experience when they suffer from brain disorders. The key to this approach — which we call ‘horizontal epidemiology — is that the problems people have to deal with are not linked to the specific diagnosis of the condition they have but are actually problems that people with very different brain conditions — we look at dementia, depression, epilepsy, migraine, multiple sclerosis, Parkinson´s Disease, schizophrenia, stroke and substance use disorders — have in common. If we are right about this, this way of collecting information would profoundly change how we organize and deliver services to people with brain disorders across Europe, improving their lives and life opportunities.
The European Brain Council was responsible for the project dissemination, creating and maintaining its website and organizing the final PARADISE conference on 20 February 2013.