pan-European Initiative Research Articles

Elevating the Standard of Care for Patients with Psoriatic Arthritis: 'Calls to Action' from a Multistakeholder Pan-European Initiative.

Psoriatic arthritis (PsA) is a complex, progressive, and often debilitating disease. Despite recent advances in treatment, numerous unmet needs in patient care persist. Rheumacensus is a multistakeholder, pan-European initiative designed to identify ways to elevate the standard of care (SoC) and treatment ambition for patients with PsA, using the perspectives of three key stakeholder groups: patients, healthcare professionals (HCPs) and payors. Rheumacensus followed three phases: an insights-gathering workshop to identify current unmet needs in PsA and an area of focus for the project, a modified Delphi process to gain consensus on improvements within the agreed area of focus, and a Consensus Council (CC) meeting which used consensus statements as inspiration to generate 'Calls to Action' (CTA)-practical measures which, if implemented, could elevate the SoC for patients with PsA. The Rheumacensus CC consisted of four patient representatives, four HCPs and four payors. All 12 members completed all three Delphi e-consultations. The shared area of focus that informed the Delphi process was "patient empowerment through education on the disease and treatment options available, to enable patient involvement in management". Four key themes emerged from the Delphi process: patient empowerment, patient knowledge and sources of education, patient-HCP consultations, and optimal initial treatment. Statements within these themes informed 12 overarching CTA, which focus on the need for a multistakeholder approach to implementing a paradigm shift towards patient-centred care and improved outcomes for patients with PsA. Rheumacensus has identified shortcomings in the current SoC for patients with PsA and provides a foundation for change through practical CTA. It is hoped that all stakeholders will now take practical steps towards implementing these CTA across Europe to elevate the SoC for patients with PsA.

Elevating the Standard of Care for Patients with Axial Spondyloarthritis: 'Calls to Action' from Rheumacensus, a Multistakeholder Pan-European Initiative.

Several barriers to optimal care in axial spondyloarthritis (axSpA) exist, which is detrimental to patient outcomes. The Rheumacensus programme aimed to identify how the standard of care (SoC) and treatment ambition for patients with axSpA could be elevated, from the unique perspective of three key stakeholders from across Europe: patients, healthcare professionals (HCPs) and payors. Rheumacensus followed three phases: an insights-gathering workshop to identify current unmet needs in axSpA and an area of focus, a modified Delphi process to gain consensus on improvements within the agreed area of focus, and a Consensus Council (CC) meeting to generate 'Calls to Action' (CTA) to highlight the changes needed to elevate the SoC for patients with axSpA. The Rheumacensus CC consisted of four patient representatives, four HCPs and four payors. All 12 members completed all three Delphi e-consultations. The shared area of focus that informed the Delphi process was patient empowerment through education on the disease and treatment options available, to enable patient involvement in management and ultimately increase treatment adherence. Four key themes emerged from the Delphi process: patient empowerment, patient knowledge, patient-HCP consultations and optimal initial treatment. These themes informed 11 overarching CTA, which demonstrate the need for a multistakeholder approach to implement a paradigm shift towards patient-centred care to elevate health outcomes in patients with axSpA. Rheumacensus identified CTA to help bridge the disparities observed in axSpA care. It is now imperative for all stakeholders to take practical steps towards addressing these CTA to elevate the SoC and treatment ambition in patients with axSpA.

Elevating the Standard of Care for Patients with Psoriasis: 'Calls to Action' from Epicensus, a Multistakeholder Pan-European Initiative.

Despite advances in treatment options and the management of patients with psoriasis, considerable unmet needs remain. Our objective was to identify ways to elevate the standard of care for patients with psoriasis by combining the perspectives of three important stakeholders: patients, clinicians and payors, and define 'Calls to Action' designed to achieve the identified changes. Eight themes relevant to elevating the standard of care were identified from an insights-gathering questionnaire completed by all three stakeholder groups. A modified Delphi exercise gained consensus on statements informed by the insights. Statements were then used to inspire 'Calls to Action' - practical steps that could be taken to realise the desired changes and elevate the standard of care. In total, 18 European experts (10 dermatologists, 3 payors and 5 patient representatives) took part in the Delphi process. Consensus was reached on statements relating to all eight themes: improve healthcare systems to better support multidisciplinary team working and digital services, real-world data generation and optimal use, improve patient access, elevate quality-of-life measures as the most important outcomes, involve patients in patient-centred and personalised approaches to care, improve the relevance and reach of guidelines, education, and multistakeholder engagement. 'Calls to Action' common to all three stakeholder groups recognised the need to capitalise on the shift to digital healthcare, the need for consistent input into registries to generate real-world evidence to support guideline development, and the necessity of educating patients on the benefits of reporting outcomes to generate real-world data. The enormous quality-of-life burden and psychological impact of psoriasis, as well as the clinical needs of patients must be better understood, including by healthcare commissioners, so that funding priorities are assessed appropriately. This unique initiative identified a practical 'Call-to-Action Framework' which, if implemented, could help improve the standard of care for patients with psoriasis.

Role of Legislation and State Policy in Minimizing the Impact of Threats to Environmental Safety in the Automobile Transport Sector

The role of legislation and state policy in minimizing the impact of threats to environmental safety in the field of automobile transport has been studied. The main directions of the development of state policy and legislation in the field of reducing the negative impact of motor vehicles on the environment and public health have been defined.
 The main problems of reducing the negative impact of motor vehicles on the environment and public health, as well as the development of state and legal mechanisms to overcome them have been determined.
 The main environmental problems faced by governments are the use of internal combustion engines and fuel quality indicators. Many EU countries are refusing to further impose more strict requirements on the operation of motor fuel engines, instead introducing mechanisms to completely abandon such vehicle propulsion systems. However, such a refusal raises another problem of greening of road transport – the problem of electrification of transport, in the process of which it is necessary to solve the problems of transport energy and disposal of used batteries of electric vehicles.
 The authors have emphasized on inexpediency that to be limited in the long run only to mechanisms for setting more strict emission requirements for cars. The authors have indicated the need for a comprehensive approach to solving environmental problems to prevent the emergence of new significant difficulties – the accumulation of used batteries of electric cars, the depletion of non-renewable resources for their manufacture, etc. It has been offered to join Ukraine to the pan-European initiative of electrification of road transport, to develop the state program for the transformation of the motor transport industry with clear deadlines for the introduction of restrictions on the use of internal combustion engines, to introduce mechanisms to financially stimulate the transition from internal combustion engines to electric combustion engines.

CLUSTERS, EUROPEAN POLICY IN EXCELLENCE OF MANAGEMENT

The European Union (EU) plays an important role in the developing of clusters, defined by the European Commission as groups of specialized enterprises – often SMEs – and other related supporting actors that cooperate closely together in a particular location. As a result, the EU launched the pan-European initiative to support cluster management (European Cluster Excellence Initiative). It recognizes the performance of cluster management by quality labels such as the Bronze, Silver, and Gold issued by The European Secretariat of Cluster Analysis. With reference to these certifications, the authors analyzed the cluster management excellence by critically studying the labels granted in terms of trends, numbers, sectors, countries, and regions. Based on the gathered results, the clusters initiatives (new or already existed) can benchmark themselves. Regional, national, and European policymakers will be able to estimate how specific factors of political, geographical, demographic, access to raw materials, and level of development can influence the number of clusters, their quality of management, and cluster typology. The goal of the research is to identify the number and type (bronze, silver, and gold label) of clusters in the EU and UK. As research methods, analyzes were performed using the European Cluster Collaboration Platform (ECCP) and European Secretariat for Cluster Analysis (ESCA) data. The main results of the research show that clusters differ not only in size or activity but also in quality. Most clusters are found in the rich countries of Western Europe. Most clusters in Europe that have a bronze label are often located on the Iberian Peninsula, the Balkans, and Central Europe.

Involving research participants in a pan-European research initiative: the EPAD participant panel experience

BackgroundIncluding participants in patient and public involvement activities is increasingly acknowledged as a key pillar of successful research activity. Such activities can influence recruitment and retention, as well as researcher experience and contribute to decision making in research studies. However, there are few established methodologies of how to set up and manage participant involvement activities. Further, there is little discussion of how to do so when dealing with collaborative projects that run across countries and operate in multiple linguistic and regulatory contexts.MethodsIn this paper we describe the set-up, running and experiences of the EPAD participant panel. The EPAD study was a pan-European cohort study with the aim to understand risks for developing Alzheimer’s disease and build a readiness cohort for Phase 2 clinical trials. Due to the longitudinal nature of this study, combined with the enrolment of healthy volunteers and those with mild cognitive impairments, the EPAD team highlighted participant involvement as crucial to the success of this project. The EPAD project employed a nested model, with local panels meeting in England, France, Scotland, Spain and The Netherlands, and feeding into a central study panel. The local panels were governed by terms of reference which were adaptable to local needs.ResultsThe impact of the panels has been widespread, and varies from feedback on documentation, to supporting with design of media materials and representation of the project at national and international meetings.ConclusionsThe EPAD panels have contributed to the success of the project and the model established is easily transferable to other disease areas investigating healthy or at-risk populations.

DiSSCo as a New Regional Model for Scientific Collections in Europe

European Natural Science Collections (NSC) are part of the global natural and cultural capital and represent 80% of the world bio-and geo-diversity. Data derived from these collections underpin thousands of scholarly publications and official reports (used to support legislative and regulatory processes relating to health, food, security, sustainability and environmental change) and let to inventions and products that today play an important role in our bio-economy. In the last decades, the research practice in natural sciences changed dramatically. Advances in digital, genomic and information technologies enable natural science collections to provide new insights but also ask for changing the current operational and business models of individual collections held at local natural history museums and universities. A new business model that provides unified access to collection objects and all scientific data derived from them. Although aggregating infrastructures like the Global Biodiversity Information Facility, GenBank and Catalogue of Life now successfully aggregate data on specific data classes, the landscape remains fragmented with limited capacity to bring together this information in a systematic and robust manner and with scattered access to the physical objects. The Distributed System of Scientific Collections (DiSSCo) represents a pan-European initiative, and the largest ever agreement of natural science museums, to jointly address the fragmentation of European collections. DiSSCo is unifying European natural science collections into a coherent new research infrastructure, able to provide bio- and geo-diversity data at the scale, form and precision required by a multi-disciplinary user base in science. DiSSCo is harmonising digitisation, curation and publication processes and workflows across the scientific collections in Europe and enables linking of occurrence, genomic, chemical and morphological data classes as well as publications and experts to the physical object. In this paper we will present the socio-cultural and governance aspects of this research infrastructure. DiSSCo is receiving political support from 11 countries in Europe and will gradually change its funding model from institutional to national funding, with temporary funding from the EC to support the preparation and development. Solutions to achieve large scale digitisation are currently designed in the EC funded ICEDIG project to underpin the future large scale digitisation carried out by the countries. Unified virtual (digitisation on demand) and transnational physical access to the collections is over the next four years being developed in the EC funded SYNTHESYS+ project. The governance of DiSSCo is designed to gradually change from a steering committee composed of a few large natural history museums contributing in cash to initiate the development into a legal entity in which national consortia are represented, with a central coordination office for daily management. Each country individually decides how its entities (scientific collection facilities, research councils, governmental bodies) are organised in their national consortium. A stakeholder and user forum, Scientific Advisory Board and International Advisory Board will ensure that DiSSCo will be functional in enabling science across disciplines and within the international landscape of infrastructures. Training and short scientific missions are being developed in the MOBILISE COST Action to build capacity in FAIR data production, publication and usage of scientific collection-derived data in Europe and to initiate the socio-cultural changes needed in the collection-holding institutes. A Helpdesk is being constructed in the SYNTHESYS+ and DiSSCo Prepare projects to further facilitate the use and scientific use cases have been collected in ICEDIG to develop and facilitate e-services tailored to scientific needs.

Addressing cultural and linguistic diversity in an online learning environment

ABSTRACTMassive Open Online Courses (MOOCs) are a growing phenomenon in the USA and Europe. A few big American platforms lead the field in terms of numbers of learners, institutions and courses on board. These platforms act as transnational platforms, and attract many European institutions because of the opportunities for visibility and branding they offer. Similarly in Europe, many platforms have emerged but no single pan-European initiative has found its own space. This is probably because of the complexity involved inaccommodatingdiverse languages, cultures and teaching approaches within the rigid structure of a Learning Management System (LMS). This paper looks at one possible response to the challenge of creating a single learning space via a multilingual and multicultural MOOC platform called EMMA, European Multiple MOOC Aggregator. It presents the results of two learner surveys with qualitative and quantitative data analysis collected within the EMMA project which aimed to assess user satisfaction with the learning experience on the platform, and whether it addressed the issue of “cultural diversity.” Initial indications suggest that learners appreciated and used the inbuilt translation systems in a multilingual approach, and that learners perceived the features and tools offered by the EMMA platform as European in feel.

Associating Occurrences with Genes, Phenotypes, and Environments through the Distributed System of Scientific Collections (DiSSCo)

Over the last few decades, the research practice in natural sciences has changed dramatically. Remote sensing, rapid identification and molecular approaches allow us to efficiently monitor the changing world around us and understand the cause of those changes. Advances of digital, genomic and information technologies enable natural science collections to provide novel discoveries and ask for new collection types and attributes, while fostering the development of innovative approaches to face the urgent societal challenges. Natural Science Collections (three billion specimens globally) represent an unparalleled scientific asset. They constitute a unique source of diverse data classes, including genomic, chemical, morphological and geo-spatial information. Despite existing successful examples of infrastructures, aggregating and publishing specific data classes (such as the Global Biodiversity Information Facility, GenBank or the Encyclopedia of Life - TraitBank), the landscape remains fragmented with limited capacity to bring together this information in a systematic and robust manner. The Distributed System of Scientific Collections (DiSSCo) represents a pan-European initiative, and the largest ever agreement of natural science museums, to jointly address the fragmentation of European collections. DiSSCo is set to unify European natural science collections into a coherent new research infrastructure, able to provide bio- and geo-diversity data at the scale, form and precision required by a multi-disciplinary user base. At the heart of the technical implementation of DiSSCo, is the development of a cloud-based non-relational data store that links occurrence, genomic, chemical and trait data classes, by robustly and unambiguously anchoring each data object back to the physical object. By harmonising digitisation, curation and publication processes and workflows, across all its nodes, DiSSCo can populate and serve a knowledge graph for European natural science collections. In this paper we will introduce the vision, mission and objectives of DiSSCo, discuss the technical approach and touch upon the socio-cultural and governance aspects supporting this large-scale European endeavour. DiSSCo is applying for inclusion in the 2018 European roadmap for research infrastructures, through an evaluation process organised by the European Strategy Forum on Research Infrastructures (ESFRI). This process is politically and/or financially supported by 12 European countries and an expanding network of 95 natural science museums in 20 countries.

Laser driven nuclear science and applications: The need of high efficiency, high power and high repetition rate Laser beams

Extreme Light Infrastructure (ELI) is a pan European research initiative selected on the European Strategy Forum on Research Infrastructures Roadmap that aims to close the gap between the existing laboratory-based laser driven research and international facility-grade research centre. The ELI-NP facility, one of the three ELI pillars under construction, placed in Romania and to be operational in 2018, has as core elements a couple of new generation 10 PW laser systems and a narrow bandwidth Compton backscattering gamma source with photon energies up to 19 MeV. ELI-NP will address nuclear photonics, nuclear astrophysics and quantum electrodynamics involving extreme photon fields. Prospective applications of high power laser in nuclear astrophysics, accelerator physics, in particular towards future Accelerator Driven System, as well as in nuclear photonics, for detection and characterization of nuclear material, and for nuclear medicine, will be discussed. Key issues in these research areas will be at reach with significant increase of the repetition rates and of the efficiency at the plug of the high power laser systems as proposed by the ICAN collaboration.

Photoneutron cross section measurements on Sm isotopes

The Extreme Light Infrastructure - Nuclear Physics, one of the three pillars of the Extreme Light Infrastructure Pan-European initiative, is a new large scale facility dedicated to nuclear physics with extreme electromagnetic fields. ELI-NP will host two 10 PW lasers and a very brilliant Gamma beam system with unprecedented intensity and energy resolution parameters. We propose to perform photon induced nuclear reactions using the very brilliant γ -ray beams provided by the Gamma beam system to examine in detail the photon absorption process and its decay modes. Here the experimental program related to nuclear research on reactions above the neutron separation threshold, which is under preparation at ELI-NP, is presented.

The HZSK Repository: Implementation, Features, and Use Cases of a Repository for Spoken Language Corpora

This article describes the process of the conception and implementation of a digital repository which is based on the software framework Fedora, Islandora, and Drupal. The main data type that is to be organized, maintained, and distributed with the repository is spoken language corpora, with a focus on multilingualism, which means that the content of the repository may be of special interest to researchers of linguistic, translational and socio-psychological studies. We concentrate on the technical requirements that had to be fulfilled with regard to our status as an official center of the Common Language Resource Infrastructure Network (CLARIN), a pan-European initiative in the context of the Digital Humanities. In particular, the requirements include preparation of information for the description of resources providing a source for metadata harvesting, registration of persistent identifiers for the long-term access and citeability of resources, implementation of a federated content search module, dealing with privacy restrictions, and the possibility to provide a single sign-on method via Shibboleth. The HZSK Repository ultimately passed two assessment processes: the assessment of the Data Seal of Approval, and a CLARIN-internal assessment procedure.

Towards experiments at the new ELI-NP facility

The Extreme Light Infrastructure (ELI) Pan-European initiative represents a major step forward in quest for extreme electromagnetic fields. The Extreme Light Infrastructure – Nuclear Physics (ELI-NP) laboratory is one of the three pillars of the ELI project, that aims to use such extreme electromagnetic fields for nuclear physics and quantum electrodynamics research. At ELI-NP two ten petawatt high-power laser systems together with a very brilliant narrow-width γ beam are the main research tools. Here the current status of the project and the experimental program related to nuclear research, which is under preparation at ELI-NP, are presented.

The Importance of Putting Pain on the Curricula in Medical Schools in Europe

ABSTRACTPain continues to be underdiagnosed and undertreated in Europe. A lack of training in pain medicine among clinicians has been identified as a barrier to optimal pain management. Except for clinicians entering specialized training in pain medicine or a related field, inadequate or nonexistent pain management training is the norm in Europe. A multidisciplinary group of experts, including representatives from the European Federation of IASP (International Association for the Study of Pain) Chapters (EFIC), is launching a pan-European initiative aimed at raising the profile and importance of undergraduate pain education.

Proposal for the standardisation of multi-centre trials in nuclear medicine imaging: prerequisites for a European 123I-FP-CIT SPECT database

Multi-centre trials are an important part of proving the efficacy of procedures, drugs and interventions. Imaging components in such trials are becoming increasingly common; however, without sufficient control measures the usefulness of these data can be compromised. This paper describes a framework for performing high-quality multi-centre trials with single photon emission computed tomography (SPECT), using a pan-European initiative to acquire a normal control dopamine transporter brain scan database as an example. A framework to produce high-quality and consistent SPECT imaging data was based on three key areas: quality assurance, the imaging protocol and system characterisation. Quality assurance was important to ensure that the quality of the equipment and local techniques was good and consistently high; system characterisation helped understand and where possible match the performance of the systems involved, whereas the imaging protocol was designed to allow a degree of flexibility to best match the characteristics of each imaging device. A total of 24 cameras on 15 sites from 8 different manufacturers were evaluated for inclusion in our multi-centre initiative. All results matched the required level of specification and each had their performance characterised. Differences in performance were found between different system types and cameras of the same type. Imaging protocols for each site were modified to match their individual characteristics to produce comparable high-quality SPECT images. A framework has been designed to produce high-quality data for multi-centre SPECT studies. This framework has been successfully applied to a pan-European initiative to acquire a healthy control dopamine transporter image database.

Optimizing Code_ Saturne computations on Petascale systems

This paper describes recent developments made to the open source general purpose CFD code Code_ Saturne that attempt to address challenges associated with computing at the Petascale. These new features include parallel improved linear solver techniques, parallel I/O methodologies and partitioning tools. The impact of these new features on parallel performance has been analysed for a range of prototype Petascale computing systems as part of the PRACE pan-European initiative.

Experimental details of the Stopped Beam RISING campaign

The RISING (Rare ISotope INvestigations at GSI) project constitutes a major pan-european initiative to study nuclear structure in exotic nuclei. A brief outline of the technical details specific to studies of isomeric decays following relativistic projectile fragmentation reactions is presented.

EuroGentest standing up to scrutiny — first year demonstrates good progress harmonizing community approaches

the enlarged community is seen as a main priority for the European Commission. However, many areas are deeply rooted in national politics. For example, cancer and cardiovascular care have usually long been considered one of the main responsibilities for the national health services. Thus, although there are encouraging signs that expertise in more traditional areas is being more widely shared, real progress is being made in the relatively new disciplines, such as allergology and genetics. This applies particularly to genetic testing for a variety of reasons. Firstly the scope of genetic testing has to transcend national boundaries. Rare mutations by their nature occur infrequently and in highly diverse locations, which means it is simply impractical and indeed impossible for every genetic testing laboratory to have the expertise to analyse and interpret all results. For this reason, sample referral across borders has long been common practice. This close working and knowledge sharing is reflected in the spirit of cooperation apparent in the European Society of Human Genetics. Another key issue is the specialized counselling needed both before and after testing. Again to develop the necessary expertise and training platforms is an immense task, difficult to achieve where there is intense competition for resources. Furthermore, even though genetic disorder patient support groups are among the most active and dedicated, their ability to contribute is limited due to the highly competitive patients’ advocacy groups. For these reasons there was a growing consensus amongst stakeholders that a pan-European initiative was needed. What was missing was a vehicle and a final impetus. The vehicle has turned out to be a Network of Excellence (NoE), which enables stakeholders to work together and provide both practical help and recommendations, which can be adapted easily by national bodies. There were then two main stimuli. The first was concern in Italy about the levels of counselling being given to patients, and the second was the eagerness of new member states to take a common approach to improving their genetic testing services. The actual project was initiated as a consequence of a study performed at the initiative of the Institute for Prospective Technology Studies (IPTS) in Seville. In response to a call to action by a former commissioner and member of the European Parliament, Philippe Busquin, who remains a staunch supporter, a consortium was assembled, led by Jean-Jacques Cassiman of the Leuven Catholic University in Belgium and successfully applied to the EU in 2004 for funding over 5 years to create a European Network of Excellence (NoE) in genetic testing. J Appl Genet 47(1), 2006, pp.

Re-engineering the desktop: taking the knowledge-base to the user to support education and city communities

IP-based videoconferencing is now at a state of development and availability that users can easily experiment with the technology from their place of work – at their desktop. Within education support and city information service environments there is growing opportunity and demand to exploit these new forms of working. In this paper we address two initiatives within Manchester that reflect this change. Firstly, the City of Manchester has an economic strategy based on the use of telematics throughout the city community and, in association with the G-MING Metropolitan Area Network, is pursuing an integrated programme of city information service development within the framework of the pan-European initiative – Infocities. Secondly, the G-MING Applications Programme (GAP) has been set up to provide a support framework within which applications and services can be developed across the university campus and between institutions over G-MING. The paper presents experiences in delivering services to the desktop both across Internet and within city and education communities. We highlight some of benefits and problems of trying to serve a wide variety of audiences and identify user reactions and lessons learned.