The international research project RADAR-CNS

Remote Assessment of Disease and Relapse in Central Nervous System Disorders (RADAR-CNS) is a major international research project. It aims to develop new ways of measuring major depressive disorder, epilepsy and multiple sclerosis (MS) using wearable devices and smartphone technology.

RADAR-CNS aims to improve people’s quality of life and change how depression, epilepsy and MS are managed and treated. Data from mobile devices can give a full picture of a person’s condition at a level of detail which was previously impossible. This offers the potential to detect changes in behaviour, sleep, or mood before the individual themselves is aware of it. This could help them to predict – or even avoid – a relapse.

RADAR-CNS brings together clinicians, researchers, engineers, computer scientists and bioinformaticians from all over the world. It is jointly led by King’s College London and Janssen Pharmaceutica NV. The project is funded by the Innovative Medicines Initiative — a Public Private Partnership set up between the European Federation of Pharmaceutical Industries and Associations (EFPIA) and the European Union). It includes 23 organisations from across Europe and the US.

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COFACE Study on the challenges and needs of family carers in Europe

whocares-01coverResults of the COFACE Families Europe stocktaking study on the challenges and needs of family carers in Europe

With more than 1,000 answers from family carers across 16 European countries, the report ‘Who cares? Study on the challenges and needs of family carers in Europe’ provides a better understanding of the situation in Europe and offers policy recommendations directly from family carers to better meet their needs and tackle their social exclusion. Family carers fill an important gap in social care provision and provide support to their disabled, or older relatives, or to their children with chronic disease, or complex needs.

One thing is clear: the current situation, in which 80% of care work in Europe falls on family carers, who are left without adequate financial compensation, social rights, or a pension scheme, is simply not sustainable.

85% of carers are women and 1 out of 3 respondents provides highly intense care of more than 56 hours per week. Family carers are Europe’s invisible workforce representing one of the most silenced, socially excluded groups. More than 70% of the respondents do not receive any financial compensation for their work and almost two-thirds do not have access to any kind of social benefits. Furthermore, poverty is a big threat for carers: 1 of every 3 respondents stated that they had difficulties to make ends meet as a consequence of their caring role. Since there are often no flexible time arrangements in place at work, many family carers faced challenges in reconciling work with care and had to leave their job or reduce their working hours.

Meeting the needs of family carers through targeted measures is necessary in all European countries since no country stood out with providing adequate support. Investment in 21st-century community-based support services and family support measures, with special regard to work-life balance policies, would contribute greatly to the social inclusion and well-being of all families. The recently proposed Work-Life Balance Directive under the European Pillar of Social Rights is a good first step towards this direction and therefore COFACE Families Europe advocates for its swift adoption.

Download here the study on the challenges and needs of family carers in Europe

Hashtag of the publication: #FamilyCarersEU



EPTRI Kick-off Meeting

fullsizeoutput_dd8The ID-EPTRI project, coordinated by CVBF and funded within the H2020-INFRADEV-01-2017 programme, aims to create the framework for a new Research Infrastructure (RI) intended to enhance technology-driven paediatric research in drug discovery and early development phases to be translated into clinical research and paediatric use of medicines.

The project arises from the need to find answers to the serious lack of medicines for children in EU and worldwide and to propose development models for paediatric medicines that integrates technology-driven aspects with clinical trials. The interest for Paediatrics was indeed mentioned in the ESFRI Roadmap 2016 ( where it was recognised that a similar RI should be included in the landscape of the research in Europe.

EPTRI will be a complementary RI in the context of the existing RIs covering the current gaps in paediatric medicines. The new RI will represent a “paediatric common service” with three already established Research Infrastructures (BBMRI, EATRIS, ECRIN) to harness efficiency and delivery of paediatric research activities and services strengthening collaboration within the scientific paediatric community.

The final result of the project will be the Conceptual Design Report to realize EPTRI, the European Paediatric Translational Research Infrastructure, describing the scientific and technical requirements as well as the key components of the new RI.

The relevance of this new European research infrastructure is of undoubtable relevance for the patients and the patients’ organisations because it can lead to a dramatic improvement of the health conditions of children, also enhancing the paediatric patients’ involvement and empowerment. Two members of the Board of Greek Carers Network participated in the EPTRI Kick-off Meeting that was held in Rome on January 15th-16th, 2018. The active participation and the strong interest shown by more of the 100 participants at the meeting, has confirmed that the ID-EPTRI project can count on a collaborative and proficient partnership that could allow reaching all the challenging objectives foreseen towards the establishment of the European Paediatric Translational Research Infrastructure.

The Kick-off meeting was the first step reached in the ID-EPTRI project, and it represents the beginning of a common collaborative work.

13/3/2018 at 10:30 “Caring for the caregiver: connecting to clinical and basic research update resources”

Κέντρο ΝευροεπιστημώνOn the 13th of March 2018 at 10:30, at the Neuroscience Center of the Academy of Athens, EPIONI holds a workshop on the topic “Caring for the caregiver: connecting to clinical and basic research update resources”. 

The event is under the auspices of the Greek Psychiatric Society, and the European Brain Council. The discussants are eminent mental health scientists such as Mr Georgios Christodoulou, professor of Psychiatry and former president of the World Federation for Mental Health, Mr Dimitrios Kontis, assistant professor of Psychiatry, Ms Magda Tsolaki, neurologist-psychiatrist and president of the Panhellenic Federation for Alzheimer’s and Related Disorders, Ms Kelly Panagiotopoulou allergologist- group therapist. Mrs Magdi Birtha from COFACE Families Europe will present the 2017 “Who Cares?” European survey for Caregivers.

The event is conducted with the support of researcher Dr Dimitra Magoura who, aside from her interesting presentation will show the attendees round the laboratories of the Neuroscience Center of the Academy of Athens so that they can experience the way research is done in one of the most modern research centres in Europe.

 Interamerican supports EPIONI 13/3 event