scholarly journals Rationale of the rare cancer list: a consensus paper from the Joint Action on Rare Cancers (JARC) of the European Union (EU)

ESMO Open ◽  
2020 ◽  
Vol 5 (2) ◽  
pp. e000666
Author(s):  
Paolo G Casali ◽  
Annalisa Trama

BackgroundThe Surveillance of Rare Cancers in Europe (RARECARE) project proposed a definition and a list of rare cancers. The Joint Action on Rare Cancers (JARC), launched by the European Union and involving 18 member states and 34 partners, promoted a wide consensus effort to review the list.Patients and methodsA group of experts was set up, including scientific societies, member state representatives of JARC, representatives of the European Reference Networks dedicated to rare cancers and rare cancer patient advocates. The definition and the list of rare clinical entities, based on the incidence data provided by two European projects (RARECARE and RARECAREnet), were rediscussed through a consensus meeting of the expert panel.ResultsBy consensus, it was reiterated that the best criterion for a definition of rare cancers is incidence, rather than prevalence. By consensus, the experts slightly modified the composition of the tiers of rare cancers, according to the definition based on an incidence threshold <6/100 000/year, and grouped all rare cancers within 12 families of rare cancers. Even when defined conservatively this way, rare cancers are not rare collectively, since they correspond to 10%–20% of all cancer cases.ConclusionsThe list of rare cancers reviewed by JARC should be viewed as a tool in the fight against rare cancers and rare diseases. It may help to appreciate that rare cancers are cancers and rare diseases at the same time, combining issues and difficulties of both. We hope that refinements to the list and a wider understanding of its implications may contribute to increase awareness of problems posed by rare cancers and to improve quality of care in a large group of patients with cancer, who may be discriminated against just because of the low frequency of their diseases.

2015 ◽  
Vol 25 (suppl_3) ◽  
Author(s):  
V Gómez ◽  
A Machado ◽  
P Rama ◽  
C Furtado ◽  
D David ◽  
...  

2020 ◽  
Vol 191 (2) ◽  
pp. 160-165
Author(s):  
Pavol Blahušiak ◽  
Matej Krivošík ◽  
Jarmila Slučiak ◽  
Andrej Javorník ◽  
Michaela Zálešáková ◽  
...  

Abstract Slovak Institute of Metrology received in 2016 funding for realisation of a set up of a radon chamber with AlphaGUARD as a secondary standard of 222Rn in air as one part of the project. This secondary standard will serve to provide the traceability for laboratories that deal with 222Rn measurements in environmental samples. This project is a response to the European Union legislation and provides metrological support for the development and implementation of the national radon action plan, which the member states of the European Union are committed to fulfil in accordance with Council Directive 2013/59/Euratom. During development of the radon chamber, the determination of its basic technical parameters, such as the exact determination of the container volume and the area of the inner walls of the radon chamber, many tightness tests of the chamber, the definition of homogeneous radon atmosphere parameters and bilateral comparisons, were realised.


2019 ◽  
Vol 3 ◽  
pp. 239920261985685 ◽  
Author(s):  
Domenico Di Giorgio ◽  
Giuseppe Scrofina ◽  
Barbara Scognamiglio ◽  
Nadia Di Carluccio ◽  
Romina Tulimiero ◽  
...  

Availability of human medicines is affected by problems associated with both manufacturing and distribution-related issues. The lack of definition of “shortages” or “unavailability” of medicines in European regulation represents an obstacle to the set up of proper preventive and counteracting measures. In this review, we describe how, within this framework, Italy started a program of shared activities, involving central and local authorities, police forces, and private stakeholders’ associations through an “ ad hoc technical forum,” that reduced the extent of the problem, at least in the short term, as demonstrated through some indicators defined by considering the key medicines affected by unavailability due to distribution-related issues. These measures should be strengthened and complemented with others so as to ensure their effectiveness in the long term.


2019 ◽  
pp. 266-280
Author(s):  
Ana E. Juncos ◽  
Nieves Pérez-Solórzano Borragán

The process of enlargement has transformed the European Union. It has had far-reaching implications for the shape and definition of Europe, and for the institutional set-up and the major policies of the Union. This has been accomplished through a number of enlargement rounds, which the first section of the chapter analyses in detail. This is followed by a review of the enlargement process itself, with a focus on the use of conditionality and the role of the main actors involved. The contributions of neo-functionalism, liberal intergovernmentalism, and social constructivism to explaining the EU’s geographical expansion are evaluated in the third section of the chapter. The success and prospect of future enlargement are discussed in the context of wider EU developments, especially the effect of the economic crisis in the euro area, ‘enlargement fatigue’, the domestic context in the candidate countries, and Brexit.


2014 ◽  
Vol 155 (21) ◽  
pp. 822-827
Author(s):  
Ágnes Váradi

The question of electronic solutions in public health care has become a contemporary issue at the European Union level since the action plan of the Commission on the e-health developments of the period between 2012 and 2020 has been published. In Hungary this issue has been placed into the centre of attention after a draft on modifications of regulations in health-care has been released for public discourse, which – if accepted – would lay down the basics of an electronic heath-service system. The aim of this paper is to review the basic features of e-health solutions in Hungary and the European Union with the help of the most important pieces of legislation, documents of the European Union institutions and sources from secondary literature. When examining the definition of the basic goals and instruments of the development, differences between the European Union and national approaches can be detected. Examination of recent developmental programs and existing models seem to reveal difficulties in creating interoperability and financing such projects. Finally, the review is completed by the aspects of jurisdiction and fundamental rights. It is concluded that these issues are mandatory to delineate the legislative, economic and technological framework for the development of the e-health systems. Orv. Hetil., 2014, 155(21), 822–827.


2018 ◽  
pp. 10-37
Author(s):  
Barbara Curyło

In the discussion on the future of the EU, the topic of differentiated integration has become a strategic issue, with different variants beginning to appear as modus operandi of the European Union, which has become a subject of controversy among Member States. Significantly, the debate on differentiated integration began to be accompanied by reflections on disintegration. This article attempts to define disintegration on the assumption that it should be defined through the prism of integration, and that such a defining process can not be limited to concluding a one-way contrast between disintegration versus integration and vice versa. This is due to the assumption that the European Union is a dichotomous construct in which integration and disintegration mutually exclude and complement each other. This dichotomy is most evident in the definition of integration and disintegration through the prism of Europeanisation top-down and bottom-up processes that generate, reveal, visualize, stimulate integration mechanisms what allows to diagnose their determinants.


2021 ◽  
Vol 13 (9) ◽  
pp. 4772
Author(s):  
Hanna Klikocka ◽  
Aneta Zakrzewska ◽  
Piotr Chojnacki

The article describes and sets the definition of different farm models under the categories of being family, small, and large-scale commercial farms. The distinction was based on the structure of the workforce and the relationship between agricultural income and the minimum wage. Family farms were dominated by the farming family providing the labour and their income per capita exceeded the net minimum wage in the country. The larger commercial farms feature a predominance of hired labour. Based on surveys, it was found that in 2016 in the EU-28 there were 10,467,000 farms (EU-13—57.3%, EU-15—42.7%). They carried out agricultural activities on an area of 173,338,000 ha (EU-13—28.5%, EU-15—71.5%). Countries of the EU-28 generated a standard output (SO) amounting to EUR 364,118,827,100 (EU-13—17.2% and EU-15—82.8%). After the delimitation, it was shown that small farming (70.8%) was the predominant form of management in the European Union (EU-13—88.2% and EU-15—79.8%) compared to family farming (18.4%) (EU-13—10.5% and EU-15—29%). In most EU countries the largest share of land resources pertains to small farms (35.6%) and family farms (38.6%) (UAA—utilised agricultural area of farms).


2020 ◽  
Vol 41 (S1) ◽  
pp. s222-s222
Author(s):  
Pita Spruijt ◽  
Paul Bergervoet ◽  
Robbin Westerhof ◽  
Merel Langelaar ◽  
Marie-Cécile Ploy

Background: In 2016, the European Union adopted unanimously Council Conclusions on the next steps to combat antimicrobial resistance under a One Health approach. To implement some of the provisions laid down in the Council Conclusions, a European Joint Action on Antimicrobial Resistance (AMR) and Healthcare-Associated Infections (HCAI) or EU-JAMRAI was set up, gathering 44 partners. Methods: As part of EU-JAMRAI, 13 participating European countries set up a country-to-country peer review system to evaluate each other’s national action plans (NAPs). This review system entailed a self-assessment, strengths–weaknesses–opportunities–threats (SWOT) analysis, and country visits. All steps were executed with representatives from both the human and the veterinary domains (One Health approach). Special attention was given to supervision and the way supervision can enhance the implementation of guidelines on AMR, both at the policy level and within healthcare institutions. Results: Despite differences in the stage of developing and implementing NAPs, all 13 countries are working on NAPs. In this process, country visits function as a moment to exchange best practices and to provide an outsider’s point of view. At the end of 2019, 13 country-to-country visits had taken place, resulting in tailor-made recommendations for each country. These recommendations were shared with the competent authority. An example is a country that used the recommendation to improve infection prevention as an immediate reason to get the topic on the agenda of the Ministry of Health. During the country visits, intersectoral participation was perceived as desirable, but in some cases it was challenging to arrange. For some highly relevant topics, it has been recognized that discussion should take place on a European level. Examples of such topics include supervision, infection prevention guidelines, funding, surveillance, and regular audits of antibiotic prescriptions for physicians including feedback loops. Conclusions: Peer review is a cooperative and friendly working method compared to common audits. The country visits function as an agenda setting tool to get or to keep AMR on the political agenda and presenting the most relevant topic(s) to address for each country.Funding: NoneDisclosures: None


2021 ◽  
pp. 146511652110273
Author(s):  
Markus Gastinger ◽  
Andreas Dür

In many international agreements, the European Union sets up joint bodies such as ‘association councils’ or ‘joint committees’. These institutions bring together European Union and third-country officials for agreement implementation. To date, we know surprisingly little about how much discretion the European Commission enjoys in them. Drawing on a principal–agent framework, we hypothesise that the complexity of agreements, the voting rule, conflict within the Council, and agency losses can explain Commission discretion in these institutions. Drawing on an original dataset covering nearly 300 such joint bodies set up by the European Union since 1992, we find robust empirical support for all expectations except for the agency loss thesis. Our findings suggest that the European Commission is the primary actor in the implementation of many of the European Union's international agreements, allowing it to influence EU external relations beyond what is currently acknowledged in the literature.


2010 ◽  
Vol 40 (4) ◽  
pp. 701-713 ◽  
Author(s):  
Philipp Nielsen

Writing the history of a continent is generally a tricky business. If the continent is not even a real continent, but rather ‘a western peninsula of Asia’ (Alexander von Humboldt) without a clear definition of where the continent becomes peninsula, things do not get any easier. Despite these problems there is no dearth of trying. In fact, writing European histories seems to become more fashionable by the year — ironically just as the political and institutional expansion of Europe is losing steam. While the European Union is catching its breath, the historians are catching up. With the first wave of post-Euro and post-big-bang-Enlargement literature written, it is time for the reviewer to survey the landscape — and to provide some guideposts for future exploration.


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