scholarly journals RARE DISEASE REGISTRIES- PURPOSE, CHALLENGES & SOLUTIONS

2021 ◽  
Vol 9 (01) ◽  
pp. 1074-1078
Author(s):  
Maria Aziz ◽  
◽  
Azma J. Khan ◽  
Sefia Khan ◽  
◽  
...  
Keyword(s):  
Rare Diseases ◽  
Correct Diagnosis ◽  
The United States ◽  
Underlying Disease ◽  
The European Union ◽  
Patient Registries ◽  
Clinical Endpoints ◽  
Data Registry ◽  
Comprehensive Knowledge ◽  
Low Prevalence

Rare diseases are defined, as any condition or disease having a low prevalence in the United States and the European Union. There is a scarcity of relevant knowledge and experience with rare diseases due to an incomplete understanding of the underlying disease mechanisms, relevant clinical endpoints, lack of correct diagnosis in the population. These challenges create a unique need for cooperation and infrastructure. Data registry is a critical tool in building a comprehensive knowledge base for these rare diseases. Our paper will provide the overview of patient registries for rare diseases, current use, limitations, challenges and proposed plan for improvement.

Coronavirus SARS-CoV-2 in wastewater

2021 ◽  
pp. 45-55
Author(s):  
В.Я. Кофман
Keyword(s):  
Rna Virus ◽  
Health Hazard ◽  
The United States ◽  
Treated Wastewater ◽  
The European Union ◽  
Sewer Systems ◽  
Long Time ◽  
Treatment Facilities ◽  
Coronavirus Infection ◽  
Low Prevalence

Пандемия СOVID-19, объявленная ВОЗ чрезвычайной ситуацией в области здравоохранения, вызвана новым коронавирусом SARS-CoV-2. По сообщениям из Евросоюза, США и Австралии, потенциальная выживаемость коронавируса SARS-CoV-2 в фекалиях и сточных водах в течение достаточно длительного времени создает реальную возможность его поступления с канализационными стоками на очистные сооружения или непосредственно в поверхностные воды при сбросе неочищенных стоков. Это свидетельствует о существовании потенциальной возможности передачи SARS-CoV-2 через воду. В этой связи особую актуальность приобретает разработка эффективных способов удаления и инактивации вирусов на очистных сооружениях. Наличие коронавирусной инфекции в сточных водах может представлять серьезную опасность для здоровья контактирующих с ними людей. К ним относится персонал очистных сооружений, а также население в целом, которое может подвергаться непосредственному воздействию необработанных или недостаточно обработанных сточных вод через неисправные водопроводные или канализационные коммуникации. Во многих странах для получения своевременной достоверной информации о распространении коронавирусной инфекции используют методы эпидемиологии сточных вод. Возможность выявления РНК вируса в сточных водах даже при низкой распространенности СOVID-19 и корреляция между концентрацией РНК SARS-CoV-2 в сточных водах и официальной информацией указывают на то, что наблюдение за сточными водами может стать чувствительным инструментом мониторинга циркуляции вируса в популяции. The COVID-19 pandemic, declared by WHO as a health emergency, is caused by a novel SARS-CoV-2 coronavirus. According to reports from the European Union, the United States and Australia, the potential survival of the SARS-CoV-2 coronavirus in feces and wastewater for a sufficiently long time creates a real threat of its entry with wastewater into treatment facilities or directly into surface water while raw wastewater is discharged. This indicates the potential for the transfer of SARS-CoV-2 by water. In this regard, the development of effective methods for the removal and inactivation of viruses at the treatment facilities is of special actuality. The presence of coronavirus infection in wastewater can pose a serious health hazard to people in contact with it. These include the personnel at the wastewater treatment facilities, as well as the general population, who may be directly exposed to raw or inadequately treated wastewater through defective water or sewer systems. In many countries wastewater epidemiology methods are used to obtain timely reliable information on the spread of coronavirus infection. Possible detection of RNA virus in wastewater even with a low prevalence rate of COVID-19 and the correlation between the concentration of SARS-CoV-2 RNA in wastewater and official information indicate that monitoring wastewater can become a sensitive tool for monitoring the circulation of the virus in the population.

scholarly journals EXPERTISE AND REGISTRATION OF ORPHAN MEDICINAL PREPARATIONS

2021 ◽  
Vol 91 (1) ◽  
pp. 20-35
Author(s):  
A. A. Kuhach ◽  
V. V. Kuhach
Keyword(s):  
European Union ◽  
Rare Diseases ◽  
The United States ◽  
Wide Distribution ◽  
Kyrgyz Republic ◽  
The European Union ◽  
Medicinal Preparations ◽  
Number Of Patients ◽  
The World ◽  
The Usa

The purpose of the study is to analyze examination and registration of orphan medicinal preparations in different countries of the world. Methods of description, comparison, grouping and analysis were used in the study. Great importance of the problem of orphan medicinal preparations manufacture and access to the market associated with a large number of rare diseases (7000-8000), their wide distribution in various regions of the world (up to 8% of the population), high cost of development and difficulty in conducting clinical trials is marked. It is shown that criteria for classifying diseases as orphan ones are their prevalence among the population as well as total number of patients in a particular country. Orphan medicinal preparations are those intended to treat rare diseases; in a number of countries (the USA and the European Union) the criterion for orphan medicinal preparations is its unprofitableness for the manufacturer. In the United States, the European Union and Japan special subdivisions for the registration of orphan medicinal preparations have been established in the structure of regulatory authorities. In order to stimulate the orphan medicinal preparations manufacture in the USA, the European Union, Australia and Japan manufacturers are given financial resources for the development and research, tax privileges, discounts and consultations with the specialists are provided during registration. Restructuring technology is widely used in the development of orphan medicinal preparations in the US and Singapore. It has been established that in order to increase accessibility for the population in different countries various accelerated procedures to give access to orphan medicinal preparations to the market are used. The terms of market exclusivity are stated: in Australia - 5 years, in the USA - 7 years, in Japan and the European Union - 10 years. It is determined that there are lists of orphan diseases (from 41 in the Kyrgyz Republic to 262 in the Russian Federation) and (or) orphan medicinal preparations approved in all the EAEU countries; accelerated registration procedures are provided; import of unregistered orphan medicinal preparations is allowed.

scholarly journals Orphan diseases and associated problems

2021 ◽  
Vol 12 (2) ◽  
pp. 28-35
Author(s):  
V. A. Shashel ◽  
V. N. Firsova ◽  
M. M. Trubilina ◽  
L. A. Podporina ◽  
N. A. Firsov
Keyword(s):  
Medical Care ◽  
Russian Federation ◽  
Rare Diseases ◽  
Western Europe ◽  
Relevant Literature ◽  
The United States ◽  
Orphan Diseases ◽  
The Russian Federation ◽  
Low Prevalence ◽  
Drug Provision

Objective: to study the main aspects of assistance to children with orphan diseases in the Russian Federation. Materials and methods: the most relevant literature sources were studied that covered a concept of orphan diseases in various countries of the world and in the Russian Federation as well as the tactics and regulation of mechanisms for helping patients with rare diseases. Results: the study showed that not all countries have legislative regulations of assistance to orphan patients. The United States and Western Europe are the most advanced in this regard. They have clear criteria for determining orphan pathology and a number of measures are taken to improve the quality of medical care for patients with rare diseases. These activities are not only aimed at improving the health care system but also encourage pharmaceutical companies to develop and produce medicines as well as contribute to the research in this area. The clinical cases covered in the article provide an idea of rare diseases, the complexity of their diagnosis, the severity of the course, and the drugs that are necessary to help patients. Conclusion: orphan diseases have been the focus of attention by the health system and national legislation in the past decades. Their extremely low prevalence in the human population creates difficulties with the timely diagnosis, provision of qualified medical care, and drug provision.

DEVELOPMENT TRENDS AND PROSPECTS OF ECONOMIC AND TRADE COOPERATION BETWEEN CHINA AND UKRAINE

2018 ◽  
Vol 2018 (6) ◽  
pp. 3-12
Author(s):  
Zhang DONGYANG ◽  
Keyword(s):  
Free Trade ◽  
Bilateral Trade ◽  
The United States ◽  
Economic Cooperation ◽  
Free Trade Zone ◽  
Asia Pacific ◽  
Economic Downturn ◽  
The European Union ◽  
Association Agreement ◽  
The Eu

The status and prospects of development of trade and economic relations between Ukraine and China are considered. It is proved that bilateral cooperation in the trade and economic sphere has made significant progress. In 2012–2017, China was the second largest trading partner of Ukraine after Russia. However, the problem of imbalance in imports and exports between Ukraine and China has not yet been resolved. In addition, the scale and number of projects in which Ukraine attracts Chinese investment is much less than investments from European countries and the United States. It is justified that trade and economic cooperation between Ukraine and China is at a new historical stage. On the one hand, Ukraine signed the Association Agreement with the European Union, and on January 1, 2016, the rules of the free trade zone between Ukraine and the EU entered into force. This helps to accelerate the integration of Ukrainian economy into European one. On the other hand, the global economic downturn requires the introduction of innovations in the model of cooperation. The Chinese initiative “One belt is one way” is one of the variants of the innovation model of cooperation. Its significance is to unite the Asia-Pacific region with the EU in order to join the Eurasian Economic Union, create a new space and opportunities for development and achieve prosperity with the Eurasian countries. All this forms unprecedented opportunities for development of bilateral economic and trade relations. It seems that to fully open the potential of Ukrainian economy and expand bilateral trade and economic cooperation, it is necessary to take into account such proposals as the establishment of the Sino-Ukrainian industrial park, the promotion of cooperation in the field of electronic commerce, the formation of the Sino-Ukrainian free trade zone and enhanced interaction within multilateral mechanisms (for example, the Shanghai Cooperation Organization and the interaction of China and the countries of Central and Eastern Europe in the 16 + 1 format).

The Central Asian Economies in the Twenty-First Century

2019 ◽  
Author(s):  
Richard Pomfret
Keyword(s):  
Migrant Workers ◽  
Global Economy ◽  
Oil And Gas ◽  
The United States ◽  
Kyrgyz Republic ◽  
The European Union ◽  
Central Asian ◽  
Asian Economies ◽  
Belt And Road ◽  
External Powers

This book analyzes the Central Asian economies of Kazakhstan, the Kyrgyz Republic, Tajikistan, Turkmenistan, and Uzbekistan, from their buffeting by the commodity boom of the early 2000s to its collapse in 2014. The book examines the countries' relations with external powers and the possibilities for development offered by infrastructure projects as well as rail links between China and Europe. The transition of these nations from centrally planned to market-based economic systems was essentially complete by the early 2000s, when the region experienced a massive increase in world prices for energy and mineral exports. This raised incomes in the main oil and gas exporters, Kazakhstan and Turkmenistan; brought more benefits to the most populous country, Uzbekistan; and left the poorest countries, the Kyrgyz Republic and Tajikistan, dependent on remittances from migrant workers in oil-rich Russia and Kazakhstan. The book considers the enhanced role of the Central Asian nations in the global economy and their varied ties to China, the European Union, Russia, and the United States. With improved infrastructure and connectivity between China and Europe (reflected in regular rail freight services since 2011 and China's announcement of its Belt and Road Initiative in 2013), relaxation of UN sanctions against Iran in 2016, and the change in Uzbekistan's presidency in late 2016, a window of opportunity appears to have opened for Central Asian countries to achieve more sustainable economic futures.

Russian Federation and the United States of America: geostrategic directions to manage the Ukrainian crisis

2019 ◽  
pp. 123
Author(s):  
Attarid Awadh Abdulhameed
Keyword(s):  
United States ◽  
European Union ◽  
National Security ◽  
Russian Federation ◽  
United States Of America ◽  
The United States ◽  
The European Union ◽  
The Usa ◽  
Ukrainian Crisis ◽  
Zero Sum

Ukrainia Remains of huge importance to Russian Strategy because of its Strategic importance. For being a privileged Postion in new Eurasia, without its existence there would be no logical resons for eastward Expansion by European Powers.  As well as in Connection with the progress of Ukrainian is no less important for the USA (VSD, NDI, CIA, or pentagon) and the European Union with all organs, and this is announced by John Kerry. There has always ben Russian Fear and Fear of any move by NATO or USA in the area that it poses a threat to  Russians national Security and its independent role and in funence  on its forces especially the Navy Forces. There for, the Crisis manyement was not Zero sum game, there are gains and offset losses, but Russia does not accept this and want a Zero Sun game because the USA. And European exteance is a Foot hold in Regin Which Russian sees as a threat to its national security and want to monopolize control in the strategic Qirim.

COMPARATIVE ANALYSIS OF THE CURRENT FRENCH FOREIGN POLICY ACTIVITY

2019 ◽  
Vol 22 (2) ◽  
pp. 74-79
Author(s):  
Nargiza Sodikova ◽  
◽  
◽  
Keyword(s):  
United States ◽  
European Union ◽  
Foreign Policy ◽  
International Security ◽  
The United States ◽  
Foreign Affairs ◽  
Modern Time ◽  
The European Union ◽  
National Interests ◽  
French Foreign Policy

Important aspects of French foreign policy and national interests in the modern time,France's position in international security and the specifics of foreign affairs with the United States and the European Union are revealed in this article

Ocena antykryzysowej polityki gospodarczej Stanów Zjednoczonych i wybranych państw członkowskich Unii Europejskiej w latach 2005–2014

2016 ◽  
pp. 26-46
Author(s):  
Marcin Jan Flotyński
Keyword(s):  
United States ◽  
European Union ◽  
Financial Markets ◽  
Global Economy ◽  
Global Financial Crisis ◽  
The United States ◽  
The European Union ◽  
High Volatility ◽  
The Global Financial Crisis ◽  
Domestic Products

The global financial crisis in 2007–2009 began a period of high volatility on the financial markets. Specifically, it caused an increased amplitude of fluctuations of the level of gross domestic products, the level of investment and consumption and exchange rates in particular countries. To address the adverse market circumstances, governments and central banks took actions in order to bolster the weakening global economy. The aim of this article is to present the anti-crisis actions in the United States and selected member states of the European Union, including Poland, and an assessment of their efficiency. The analysis conducted indicates that generally the actions taken in the United States in response to the crisis were faster and more adequate to the existing circumstances than in the European Union.

Evolution of Germany’s Stance Regarding the Three Seas Initiative

2019 ◽  
Vol 17 (3) ◽  
pp. 65-77
Author(s):  
Martin Dahl
Keyword(s):  
Foreign Policy ◽  
The United States ◽  
Great Powers ◽  
The European Union ◽  
Global Game ◽  
New Instrument ◽  
Law And Justice ◽  
Definition Of ◽  
The Baltic ◽  
Polish Foreign

When the political camp centred on the Law and Justice party (PiS) came to power in 2015, it led to a change in priorities in Polish foreign policy. The Three Seas Initiative (TSI), understood as closer cooperation between eastern states of the European Union in the area between the Baltic, Adriatic, and Black seas, has become a new instrument of foreign policy. The initiative demonstrates the growing importance of Central and Eastern Europe in the global game of great powers. The region has become a subject of rivalry, not only between the United States and Russia but also China. Therefore, the main objective of this article is to try to describe the importance of the region to Germany and how Germany’s stance on the TSI has evolved. The article consists of three parts, an introduction to the issues, the genesis of the TSI, and the definition of goals set by the states participating in this initiative, as well as analysis of the German stance towards the initiative since its development in 2015. The theories of geopolitics and neorealism are used as the theoretical basis for the analysis.

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