scholarly journals The German Hemophilia Registry: Growing with Its Tasks

2020 ◽  
Vol 9 (11) ◽  
pp. 3408
Author(s):  
Heike Duda ◽  
Janina Hesse ◽  
Birgit Haschberger ◽  
Anneliese Hilger ◽  
Christine Keipert

Hemophilia is a rare heredity bleeding disorder that requires treatment for life. While few therapeutic options were available in the past, multiple recent breakthroughs have fundamentally altered and diversified hemophilia therapy, with even more new therapeutic options forthcoming. These changes are mirrored by significant regulatory and legal changes, which have redefined the role of hemophilia registries in the European Union (EU). This dual paradigm shift poses new regulatory, scientific but also structural requirements for hemophilia registries. The aim of this manuscript is to enumerate these significant challenges and to demonstrate their incorporation into the redesign of the German Hemophilia Registry (Deutsches Hämophilieregister, dhr). To identify the spectrum of hemophilia therapies and the degree of regulatory changes, a horizon screening was performed. Consequently, a core dataset for the dhr was defined by harmonization with regulatory guidelines as well as other hemophilia registries and by heeding the needs of different stakeholders (patients, clinicians, regulators, and scientists). Based on this information, a new registry structure was established, which is optimized for capturing data on new and established hemophilia therapies in a changing therapeutic and regulatory landscape

Author(s):  
Ramnik Kaur

E-governance is a paradigm shift over the traditional approaches in Public Administration which means rendering of government services and information to the public by using electronic means. In the past decades, service quality and responsiveness of the government towards the citizens were least important but with the approach of E-Government the government activities are now well dealt. This paper withdraws experiences from various studies from different countries and projects facing similar challenges which need to be consigned for the successful implementation of e-governance projects. Developing countries like India face poverty and illiteracy as a major obstacle in any form of development which makes it difficult for its government to provide e-services to its people conveniently and fast. It also suggests few suggestions to cope up with the challenges faced while implementing e-projects in India.


2021 ◽  
Vol 46 (3-4) ◽  
pp. 416-445
Author(s):  
Caroline von Gall

Abstract In discussing the concept of the ‘living constitution’ in Russian constitutional theory and practice, this paper shows that the Russian concept of the living constitution differs from U.S. or European approaches to evolutive interpretation. The Russian concept has its roots in Soviet and pre-revolutionary Russian constitutional thinking. It reduces the normative power of the Constitution but allows an interpretation according to changing social conditions and gives the legislator a broad margin of appreciation. Whereas the 1993 Russian constitutional reform had been regarded as a paradigm shift with the intention to break with the past by declaring that the Constitution shall have supreme judicial force and direct effect, the paper also gives answers to the complexity of constitutional change and legal transplants and the role of constitutional theory and practice for the functioning of the current authoritarian regime in Russia.


2018 ◽  
Vol 34 (1) ◽  
pp. 57-73 ◽  
Author(s):  
Anna Brosius ◽  
Erika J van Elsas ◽  
Claes H de Vreese

Over the past decade, the European Union has lost the trust of many citizens. This article investigates whether and how media information, in particular visibility and tonality, impact trust in the European Union among citizens. Combining content analysis and Eurobarometer survey data from 10 countries between 2004 and 2015, we study both direct and moderating media effects. Media tone and visibility have limited direct effects on trust in the European Union, but they moderate the relation between trust in national institutions and trust in the European Union. This relation is amplified when the European Union is more visible in the media and when media tone is more positive towards the European Union, whereas it is dampened when media tone is more negative. The findings highlight the role of news media in the crisis of trust in the European Union.


2018 ◽  
Vol 18 (2) ◽  
pp. 174-192 ◽  
Author(s):  
Chiara Bonacchi ◽  
Mark Altaweel ◽  
Marta Krzyzanska

This article assesses the role of the pre-modern past in the construction of political identities relating to the UK’s membership in the European Union by examining how materials and ideas from Iron Age to Early Medieval Britain and Europe were leveraged by those who discussed the topic of Brexit in over 1.4 million messages published in dedicated Facebook pages. Through a combination of data-intensive and qualitative investigations of textual data, we identify the ‘heritages’ invoked in support of pro- or anti-Brexit sentiments. We show how these heritages are centred around myths of origins, resistance and collapse that incorporate tensions and binary divisions . We highlight the strong influence of past expert practices in shaping such deeply entrenched dualistic thinking and reflect over the longue durée agency of heritage expertise. This is the first systematic study of public perceptions and experience of the past in contemporary society undertaken through digital heritage research fuelled by big data. As such, the article contributes novel methodological approaches and substantially advances theory in cultural heritage studies. It is also the first published work to analyse the role of heritage in the construction of political identities in relation to Brexit via extensive social research.


1998 ◽  
Vol 4 (4) ◽  
pp. 598-620 ◽  
Author(s):  
Steffen Lehndorff

A survey of working time trends in the countries of the European Union over the past twenty years reveals the diminishing role of general collectively agreed working time reductions. The increasing importance of part-time work is interpreted less as a shift in emphasis from "collective" to "individual" working time reductions than as a concomitant of increasing, female labour market participation which may represent a transition to equal status of men and women in working life. On the basis of the European experiences reported in the other articles contained in this issue, the author discusses possible paths to a revival of collective bargaining and statutory policy in the working time field.


Author(s):  
Joan M. Lappe

Vitamin D deficiency is pandemic, spanning many continents and including all ages, genders and racial/ethnic groups. Currently, world-wide attention is focused on the importance of vitamin D in optimizing health and preventing disease. This focus is largely the result of the scientific discovery that vitamin D receptors are present in nearly every tissue and cell in the body and that adequate vitamin D status is essential for optimal functioning of these tissues and cells. An impressive body of research has accumulated over the past two decades providing new information about the role of vitamin D in prevention of a broad range of diseases. The purpose of this paper is to provide a review of this new information.


2011 ◽  
Vol 3 (2) ◽  
pp. 1-22 ◽  
Author(s):  
Victor A. Shnirelman

Interest in the social role of religion, including religious education (RE), is on the increase in the European Union. Yet whereas Western educators focus mostly on the potential of religion for dialogue and peaceful coexistence, in Russia religion is viewed mostly as a resource for an exclusive cultural-religious identity and resistance to globalization. RE was introduced into the curriculum in Russia during the past ten to fifteen years. The author analyzes why, how, and under what particular conditions RE was introduced in Russia, what this education means, and what social consequences it can entail.


2007 ◽  
Vol 3 (3) ◽  
Author(s):  
Rouba Al-Fattal

Canada and the European Union (EU) share, to a certain extent, a similar political culture, one based on multilateralism and the use of soft power. Nevertheless, over the past fifteen years Canada has been sometimes adopting disarmament policies that are similar to those of the EU and different from those of the US, while in other times it has been adopting policies that are similar to those of the US and different from those of the EU. This indicates that similarity in political culture alone is not sufficient enough to create convergence on foreign policies and that certain conditions must first be met for political culture to take precedence over neorealist explanations when dealing with security issues. Using Canadian, EU and US decisions on the issues of anti-personnel landmines and Iranian nuclear proliferation dilemma as case studies, this article analyses the conditions under which political culture plays a role in forming similar security policies.


2008 ◽  
Vol 60 (1) ◽  
pp. 137-170
Author(s):  
Bojan Kovacevic

Since the beginning of the European integration process until the present day the states have given up some significant elements of their sovereignty transferring an increasing number of authorities to the European institutions. The extended framework within which the rules of the European game are determined also exerts a considerable impact on the regions as integral units of the present-day complex states. Politically and economically powerful regions are more and more independent in the contemporary European political and economic space. This has created a distorted picture of 'Europe of the regions' where the regions and European institutions will establish direct contacts, making the role of states superfluous. In this paper, the author endeavors to offer a theoretical historical and philosophic frame for consideration of the attempts to overcome the antinomy of freedom and order both in the past and in the present, particularly analyzing the position and role of the regions in the European Union political and economic system.


Author(s):  
Ieva Turskytė ◽  
Alfreda Šapkauskienė

In 2008, a global financial crisis happened. It led to strong currency price volatility. Because of that, discussions on the need for an alternative, institution-independent currency occurred. Due to this reason the first decentralized cryptocurrency Bitcoin was created. The new and not yet explored concept of cryptocurrency changed the previously strictly defined role of money. Currently, with the growth of the cryptocurrency market, the most important regional institutions (e.g. FED, EBA) provide regulatory guidelines of a recommendatory nature. The regulations of these institutions remain significant, reflecting the dominant approach to digital money. Because of this reason, the aim of the study is to identify the factors that determine the difficulties in the legalization process of cryptocurrencies and to investigate the features of the European Union's cryptocurrency regulatory policy. Methods used: analysis of scientific literature and legal documents, systematization, comparison, interpretation and generalization of information. The results of the study show that the European Union has taken active regulatory action with the growing importance of cryptocurrencies in the world. To date, a document regulating the definition of cryptocurrencies has not yet been adopted at Union level, but the adoption of the cryptocurrency regulation proposal presented in 2020 would mean greater clarity and security for cryptocurrency issuers, intermediaries and users.


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