scholarly journals Recommendations for Centres of Expertise in Rare Anaemias. The ENERCA White Book

2014 ◽  
Vol 4 (3) ◽  
pp. 86-90
Author(s):  
Joan-Lluis Vives Corrons ◽  
María del Mar Mañú Pereira ◽  
Carlos Romeo-Casabona ◽  
Pilar Nicolás ◽  
Béatrice Gulbis ◽  
...  
Keyword(s):  
European Union ◽  
Rare Diseases ◽  
Health Professionals ◽  
Working Group ◽  
Public Authorities ◽  
Health Authorities ◽  
White Book ◽  
Official Recognition ◽  
Centres Of Expertise

The Community added value of Centres of Expertise (CoE) and European Reference Networks (ERN) is particularly high for rare diseases (RD) due to the rarity of these conditions, which implies both a small number of patients and scarcity of expertise within a single country. Gathering expertise at the European level is therefore, paramount in order to ensure equal access to accurate information, appropriate and timely diagnosis and high quality clinical care and follow up for patients with rare diseases. This applies particularly to rare anaemias due to the high number of different rare diseases that constitute this group. In this context, the European Network for Rare and Congenital Anaemias (ENERCA), co-financed by the European Commission, was created in 2002 with the aim of prevention and management of rare anaemias (RA) and the development and promotion of policies to improve the well-being of European Union citizens. The ENERCA White Book is a position paper, developed as a deliverable of the ENERCA (phase 3) project that intends to contribute to the creation of a ERN in RA (ERN-RA) by preparation of the recommendations and, in particular, the definition of the criteria that CoE, local centres (LC) and their interrelations have to fulfil as healthcare providers. It has been nourished by all the activities that have been performed over the past ten years within the ENERCA framework. The White Book is addressed to authorities in charge of the identifying CoE, as an essential requirement for the official recognition of the ERN, to European and national health authorities, Healthcare centres and health professionals, as well as to all other stakeholders interested in RA. It is also addressed to the patients, as a way to empower their community in this process. One particular characteristic of the White Book is the integration of the three main aspects of a CoE: (a) ethical and legal frameworks to ensure the non-discrimination and non-stigmatisation of rare disease patients across Europe, within their sphere of competencies; (b) clinical and laboratory frameworks for defining technical and quality criteria including scope, general and disease specific elements currently defined as technical and professional standards for the diagnosis, treatment and follow-up of patients with RA; and (c) the expectations patients have of CoE. Conceived as a working tool directed to a broad range of stakeholders, the White book has been designed and structured to be comprehensible even to non-technical and /or non-professional audiences. The reader will find an up-to-date description and epidemiological information on RA as well as the European Union background policies for defining CoE and ERN-RA. A working group was created with experts of different profiles, known as the European Working Group on Rare Anaemias (EGRA). In order to achieve its objectives, the methodology used by EGRA, was characterised by three main principles: Interdisciplinary, European coverage, and evidence-based principles. Work has been developed into four sequential steps: 1. Analysis of the current situation of RA in Europe by healthcare professionals in order to identify the most relevant issues that have to be addressed by a centre in order for it to be recommended as CoE. 2. Preparation of questionnaires to perform surveys on how the relevant issues identified in step 1 can be translated into practical recommendations. 3. Analysis of the questionnaire results by face to face meetings, feedback and consensus evaluation, and 4. Preparation of a report on ENERCA policy recommendations for CoE. This report is presented in a user-friendly format, easy to understand and available through the ENERCA website (www.enerca.org). Several important conclusions can be drawn from the ENERCA White Book, including the importance of laboratories involved in the diagnosis of RA, patient oriented and multidisciplinary care at the CoE, the need for coordination and cooperation within and outside the centre, the provision of information to patients and health professionals and the involvement of public authorities at the national and European levels. Official recognition of this structure and assurance of its long term sustainability will only be achieved if public authorities work hand by hand with both professionals experts in different disciplines and patients. Finally, the ENERCA White book aims to be a practical tool for health authorities of Member States (MS) that are preparing their national directory of formally designated CoE. For this, it is important that MS authorities recognise RA as an important health component to be included within the National Plans or Actions for Rare Diseases.

Hungarian National Plan and Strategy for Rare Diseases

2014 ◽  
Vol 155 (9) ◽  
pp. 325-328 ◽  
Author(s):  
György Kosztolányi
Keyword(s):  
European Union ◽  
Rare Diseases ◽  
Present Report ◽  
Health Resources ◽  
The European Union ◽  
National Plan ◽  
European Union Policy ◽  
Lack Of Information ◽  
Health Authorities ◽  
Information Research

The rarity of low prevalence diseases and the lack of information, research, diagnosis, treatment and expert availability may mean that the people affected do not benefit from the health resources and services they need. Rare diseases are considered to have little impact on society as a whole, yet they pose serious difficulties for sufferers and their families. By the end of the last century, two robust achievements in science and technology, i.e. the biotechnological and informatics revolutions, have created a real base for global approach to rare diseases by coordinating the capacities for health care, biomedical research and drug development and pooling the very limited resources available both nationally and transnationally. The European Commission has taken a number of actions which help patients and professionals to share expertise and information across borders with the objective of reducing the number of people suffering from these types of diseases. These actions together form the legal basis of the European Union policy on rare diseases. Orphan or rare diseases are now one of the priorities in the public health programmes in European Union. In 2009, the document “European Union Council Recommendation on an action in the field of rare diseases” was released with the main goal to provide national health authorities with supporting tools for the development and implementation of national plans and strategies for rare diseases by the end of 2013. This recommendation adopted by European Union Member States, allows common policy guidelines to be shared everywhere in Europe. By September 2013 the Hungarian National Plan for Rare Diseases, a health policy strategy until 2020 was finalized. The present report gives a short view on the document. Orv. Hetil., 2014, 155(9), 325–328.

scholarly journals EURASIAN ASSOCIATION OF CARDIOLOGY (EAC)/ NATIONAL SOCIETY OF HEART FAILURE AND MYOCARDIAL DISEASE (NSHFMD) GUIDELINES FOR THE DIAGNOSIS AND TREATMENT OF CHRONIC HEART FAILURE (2020)

2020 ◽  
pp. 6-76
Author(s):  
S. N. Tereshchenko ◽  
I. V. Zhirov ◽  
T. M. Uskach ◽  
M. A. Saidova ◽  
S. P. Golitsyn ◽  
...  
Keyword(s):  
Public Health ◽  
Heart Failure ◽  
Conflict Of Interest ◽  
Health Professionals ◽  
Working Group ◽  
Careful Consideration ◽  
Individual Responsibility ◽  
National Society ◽  
Health Authorities ◽  
Public Health Authorities

Disclaimer The EAC/NSHFMD Guidelines represent the views of the EAC and NSHFMD, and were produced after careful consideration of the scientific and medical knowledge, and the evidence available at the time of their publication. The EAC and NSHFMD is not responsible in the event of any contradiction, discrepancy, and/or ambiguity between the EAC/NSHFMD Guidelines and any other official recommendations or guidelines issued by the relevant public health authorities, in particular in relation to good use of healthcare or therapeutic strategies. Health professionals are encouraged to take the EAC/NSHFMD Guidelines fully into account when exercising their clinical judgment, as well as in the determination and the implementation of preventive, diagnostic, or therapeutic medical strategies; however, the EAC/NSHFMD Guidelines do not override, in any way whatsoever, the individual responsibility of health professionals to make appropriate and accurate decisions in consideration of each patient’s health condition and in consultation with that patient and, where appropriate and/or necessary, the patient’s caregiver. Nor do the EAC/NSHFMD Guidelines exempt health professionals from taking into full and careful consideration the relevant official updated recommendations or guidelines issued by the competent public health authorities, in order to manage each patient’s case in light of the scientifically accepted data pursuant to their respective ethical and professional obligations. It is also the health professional’s responsibility to verify the applicable rules and regulations relating to drugs and medical devices at the time of prescription.Members of the Working Group confirmed the lack of financial support/ conflict of interest. In the event of a conflict of interest being reported, the member (s) of the Working Group was (were) excluded from the discussion of sections related to the area of conflict of interest.E.B. Wataman professor, Dr. of Sci. (Med.) (Moldova); E.K. Kurlyanskaya, Cand. of Sci. (Med.) (Belarus); A.M. Noruzbaeva professor (Kyrgyzstan); V.A. Azizov professor (Azerbaijan); Zelveyan P.A., Dr. of Sci. (Med.) (Armenia)

IMMUNITY AND PROTECTION AGAINST RETALIATION GRANTED TO „WHISTLEBLOWERS” – PERSONS WHO REPORT VIOLATIONS OF EUROPEAN UNION LAW AND POLICY

2021 ◽  
Vol specjalny II (XXI) ◽  
pp. 225-245
Author(s):  
Andrzej Świątkowski
Keyword(s):  
European Union ◽  
Legal Protection ◽  
Eu Law ◽  
European Union Law ◽  
Public Authorities ◽  
Law And Policy ◽  
Methods And Techniques ◽  
External Reporting ◽  
Eu Policies

The author analyzes the Directive 2019/1937 promoting the idea of cooperation between employees and public authorities regarding information on abuses of European Union law and policy. It outlines the purpose (to improve enforcement and EU policies), methods and techniques for this cooperation (internal and external reporting and follow-up). It discusses the immunity and legal protection (prohibition against retaliation) granted to persons who report a breach of EU law and policy. The author believes that due to historical events, the employed persons, potential whistleblowers, may be critical of the above idea. According to the author, the success of the existing directive depends on its effects, which will be known only in five years.

scholarly journals Eurasian Guidelines for the diagnostics and management of stable coronary artery disease (2020-2021)

2021 ◽  
pp. 54-93
Author(s):  
Yu. A. Karpov ◽  
O. L. Barbarash ◽  
A. A. Boschenko ◽  
V. V. Kashtalap ◽  
V. V. Kukharchuk ◽  
...  
Keyword(s):  
Public Health ◽  
Conflict Of Interest ◽  
Health Professionals ◽  
Clinical Judgment ◽  
Working Group ◽  
Stable Coronary Artery Disease ◽  
Careful Consideration ◽  
Individual Responsibility ◽  
Health Authorities ◽  
Public Health Authorities

Disclaimer The EAC Guidelines represent the views of the EAC, and were produced after careful consideration of the scientific and medical knowledge, and the evidence available at the time of their publication. The EAC is not responsible in the event of any contradiction, discrepancy, and/or ambiguity between the EAC Guidelines and any other official recommendations or guidelines issued by the relevant public health authorities, in particular in relation to good use of healthcare or therapeutic strategies. Health professionals are encouraged to take the EAC Guidelines fully into account when exercising their clinical judgment, as well as in the determination and the implementation of preventive, diagnostic, or therapeutic medical strategies; however, the EAC Guidelines do not override, in any way whatsoever, the individual responsibility of health professionals to make appropriate and accurate decisions in consideration of each patient’s health condition and in consultation with that patient and, where appropriate and/or necessary, the patient’s caregiver. Nor do the EAC Guidelines exempt health professionals from taking into full and careful consideration the relevant official updated recommendations or guidelines issued by the competent public health authorities, in order to manage each patient’s case in light of the scientifically accepted data pursuant to their respective ethical and professional obligations. It is also the health professional’s responsibility to verify the applicable rules and regulations relating to drugs and medical devices at the time of prescription.Members of the Working Group confirmed the lack of financial support / conflict of interest. In the event of a conflict of interest being reported, the member (s) of the Working Group was (were) excluded from the discussion of sections related to the area of conflict of interest.

scholarly journals EURASIAN ASSOCIATION OF CARDIOLOGY (EAC)/ RUSSIAN NATIONAL ATHEROSCLEROSIS SOCIETY (RNAS, RUSSIA) GUIDELINES FOR THE DIAGNOSIS AND CORRECTION OF DYSLIPIDEMIA FOR THE PREVENTION AND TREATMENT OF ATHEROSCLEROSIS (2020)

2020 ◽  
pp. 6-29
Author(s):  
V. V. Kukharchuk ◽  
M. V. Ezhov ◽  
I. V. Sergienko ◽  
G. G. Arabidze ◽  
T. V. Balakhonova ◽  
...  
Keyword(s):  
Public Health ◽  
Conflict Of Interest ◽  
Health Professionals ◽  
Clinical Judgment ◽  
Working Group ◽  
Medical Knowledge ◽  
Careful Consideration ◽  
Individual Responsibility ◽  
Health Authorities ◽  
Public Health Authorities

Disclaimer РThe EAC/RNAS Guidelines represent the views of the EAC and RNAS, and were produced after careful consideration of the scientific and medical knowledge, and the evidence available at the time of their publication. The EAC and RNAS is not responsible in the event of any contradiction, discrepancy, and/or ambiguity between the EAC/RNAS Guidelines and any other official recommendations or guidelines issued by the relevant public health authorities, in particular in relation to good use of healthcare or therapeutic strategies. Health professionals are encouraged to take the EAC/RNAS Guidelines fully into account when exercising their clinical judgment, as well as in the determination and the implementation of preventive, diagnostic, or therapeutic medical strategies; however, the EAC/RNAS Guidelines do not override, in any way whatsoever, the individual responsibility of health professionals to make appropriate and accurate decisions in consideration of each patient’s health condition and in consultation with that patient and, where appropriate and/or necessary, the patient’s caregiver. Nor do the EAC/RNAS Guidelines exempt health professionals from taking into full and careful consideration the relevant official updated recommendations or guidelines issued by the competent public health authorities, in order to manage each patient’s case in light of the scientifically accepted data pursuant to their respective ethical and professional obligations. It is also the health professional’s responsibility to verify the applicable rules and regulations relating to drugs and medical devices at the time of prescription.Members of the Working Group confirmed the lack of financial support / conflict of interest. In the event of a conflict of interest being reported, the member (s) of the Working Group was (were) excluded from the discussion of sections related to the area of conflict of interest.

How Do Public Service Professionals Behave in Risky Situations? The Importance of Organizational Culture

2021 ◽  
pp. 027507402110103
Author(s):  
Emily Rose Tangsgaard
Keyword(s):  
Organizational Culture ◽  
Risk Perception ◽  
Public Service ◽  
Health Professionals ◽  
Organizational Cultures ◽  
Negative Consequences ◽  
Seeking Behavior ◽  
Subsequent Behavior ◽  
Hospital Wards

Many situations in public service delivery are characterized by uncertainty about the potential negative consequences following decisions. These risky situations make the behavior of frontline professionals particularly important. But what shapes the risk perception and subsequent behavior of frontline professionals in risky situations? This article explores the idea that organizational culture provides part of the answer. To examine this, a comprehensive qualitative study with participant observations and interviews at five public hospital wards was conducted. The findings demonstrate the importance of organizational culture on risk perception and behavior in risky situations. Basic cultural assumptions related to professional discussion, administering medicine, grading of adverse events, and prioritizing follow-up activities matter to behavior in risky situations. In organizational cultures with high levels of trust and dialogue about decision-making, the health professionals rely on each other and ask for second opinions, when making decisions in risky situations. Conversely, in organizational cultures with little trust and professional discussion, the health professionals are less likely to ask for second opinions and follow up on risky situations, which increases the possibility of unintended, negative consequences. In this way, organizational culture can be a driver of risk-reducing and risk-seeking behavior among frontline professionals.

scholarly journals States, firms, and security: How private actors implement sanctions, lessons learned from the Netherlands

2021 ◽  
pp. 1-20
Author(s):  
Francesco Giumelli ◽  
Michal Onderco
Keyword(s):  
United States ◽  
European Union ◽  
United Nations ◽  
The United States ◽  
United Nations Security Council ◽  
The European Union ◽  
Public Authorities ◽  
For Profit ◽  
The United Nations ◽  
Private Actors

Abstract While the current practice of the United Nations Security Council, the European Union, and the United States leans towards imposing only targeted sanctions in most of the cases, private actors often complain about inability to process financial transactions, ship goods, or deliver services in countries where sanctions targets are located. The impact of sanctions often ends up being widespread and indiscriminate because sanctions are implemented by for-profit actors. This article investigates how for-profit actors relate to the imposition of sanctions, how they reflect them in their decisions, and how they interact with the public authorities. The findings of our research show that for-profit actors, with the possible exception of the largest multinationals, do not engage with public authorities before the imposition of sanctions. The behaviour of for-profit actors in the implementation phase is in line with the assumption of firms and business as profit-maximisers. Weighting the profits from business against the costs of (non-)compliance and make the decisions that in their view maximise their profit. Indeed, de-risking seems to be the most common approach by the companies due to the uncertainties produced by the multiple and overlapping sanctions regimes imposed by the United Nations, the European Union, and the United States.

scholarly journals Sarcopenia Is Associated with Mortality in Adults: A Systematic Review and Meta-Analysis

Gerontology ◽  
2021 ◽  
pp. 1-16
Author(s):  
Jane Xu ◽  
Ching S. Wan ◽  
Kiriakos Ktoris ◽  
Esmee M. Reijnierse ◽  
Andrea B. Maier
Keyword(s):  
Systematic Review ◽  
Working Group ◽  
Meta Analysis ◽  
Nursing Home Residents ◽  
Community Dwelling ◽  
Risk Of Mortality ◽  
European Working ◽  
Subgroup Analyses ◽  
Meta Analyses

<b><i>Background:</i></b> Sarcopenia can predispose individuals to falls, fractures, hospitalization, and mortality. The prevalence of sarcopenia depends on the population studied and the definition used for the diagnosis. <b><i>Objective:</i></b> This systematic review and meta-analysis aimed to investigate the association between sarcopenia and mortality and if it is dependent on the population and sarcopenia definition. <b><i>Methods:</i></b> A systematic search was conducted in MEDLINE, EMBASE, and Cochrane from 1 January 2010 to 6 April 2020 for articles relating to sarcopenia and mortality. Articles were included if they met the following criteria – cohorts with a mean or median age ≥18 years and either of the following sarcopenia definitions: Asian Working Group for Sarcopenia (AWGS and AWGS2019), European Working Group on Sarcopenia in Older People (EWGSOP and EWGSOP2), Foundation for the National Institutes of Health (FNIH), International Working Group for Sarcopenia (IWGS), or Sarcopenia Definition and Outcomes Consortium (SDOC). Hazard ratios (HR) and odds ratios (OR) were pooled separately in meta-analyses using a random-effects model, stratified by population (community-dwelling adults, outpatients, inpatients, and nursing home residents). Subgroup analyses were performed for sarcopenia definition and follow-up period. <b><i>Results:</i></b> Out of 3,025 articles, 57 articles were included in the systematic review and 56 in the meta-analysis (42,108 participants, mean age of 49.4 ± 11.7 to 86.6 ± 1.0 years, 40.3% females). Overall, sarcopenia was associated with a significantly higher risk of mortality (HR: 2.00 [95% CI: 1.71, 2.34]; OR: 2.35 [95% CI: 1.64, 3.37]), which was independent of population, sarcopenia definition, and follow-up period in subgroup analyses. <b><i>Conclusions:</i></b> Sarcopenia is associated with a significantly higher risk of mortality, independent of population and sarcopenia definition, which highlights the need for screening and early diagnosis in all populations.

scholarly journals eHealth for patients with rare diseases: the eHealth Working Group of the European Reference Network on Rare Multisystemic Vascular Diseases (VASCERN)

2021 ◽  
Vol 16 (1) ◽  
Author(s):  
Alessia Paglialonga ◽  
Raffaella Gaetano ◽  
Leema Robert ◽  
Marine Hurard ◽  
Luisa Maria Botella ◽  
...  
Keyword(s):  
Rare Diseases ◽  
Working Group ◽  
Vascular Diseases ◽  
Mobile App ◽  
Reference Network ◽  
Training And Education ◽  
Digital Platforms ◽  
Patient Organizations ◽  
European Reference Network ◽  
Strategic Assets

Abstract Background The European Reference Network on Rare Multisystemic Vascular Diseases (VASCERN) was launched in 2017 and involves, to date, 35 highly specialised multidisciplinary expert centres (from the 30 full Healthcare Provider members) coming from 11 countries and more than 70 patient organizations from 16 countries. The eHealth Working Group (WG) of VASCERN was set up to develop practical, patient-centred solutions and strategies for effective use of eHealth tools to answer the needs of patients with multisystemic vascular rare diseases. The eHealth WG Following the identified patients’ needs and following the guiding principles of collaboration and patient-centredness, the eHealth WG was created with the following aims: to develop a mobile app to help patients find expert centres and patient organizations, and to develop resources (Pills of Knowledge, PoK) for training and education via digital platforms (eLearning). The mobile app includes, to date, functionalities that allow users to find expert centres and patient organizations across Europe in the area of rare multisystemic vascular diseases. Discussed app developments include personalized digital patient passports, educational material, emergency management guidelines and remote consultations. Regarding training and education, a variety of PoK have been developed. The PoK cover several topics, target several user groups, and are delivered in various formats so that they are easy-to-use, easy-to-understand, informative, and viable for delivery and sharing through digital platforms (eLearning) including, e.g., the VASCERN YouTube™ channel. Conclusion Overall, the work carried out by the eHealth WG of VASCERN can be seen as a pilot experience that may serve as a basis to for collaborative development of patient-centred eHealth tools that answer the needs of patients with various rare diseases, not limited to rare multisystemic vascular diseases. By expanding the multidisciplinary approach here described, clinical and research networks can take advantage of eHealth services and use them as strategic assets in achieving the ultimate goal of ensuring equity of access to prevention programs, timely and accurate diagnosis and specialized care for patients with rare diseases throughout Europe.

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