bluuebunny/crossref_metadata_2025_split huggingface dataset:
Designing ATHN 7: Safety, effectiveness and practice of treatment of people with haemophilia in the United States through a natural history cohort study
Authors: Buckner Tyler W. , Daoud Nabil , Miles Moses , O'Neill Carrie , Watson Crystal , Recht Michael 
Published: May 2024

Abstract

Background
Haemophilia A and B are X-linked inherited bleeding disorders, resulting in the deficiency of clotting factor VIII and IX, respectively. Since the introduction of recombinant clotting factor concentrates in the early 1990s, the major safety concern for haemophilia therapy has been the development of inhibitory antibodies, or inhibitors. Over the recent past, new therapies for the treatment and prevention of bleeding have received regulatory approval or are under study.

Objective
‘ATHN 7: A Natural History Cohort Study of the Safety, Effectiveess, and Practice of Treatment for People with Hemophilia is designed to determine the safety of current haemophilia therapies when used for participants with haemophilia with or without inhibitors. Secondarily, ATHN 7 will describe the real-world effectiveness of current therapies by assessing bleeding rate and location, therapy utilisation, adherence, and patient-reported outcomes.

Methods
This longitudinal, observational cohort study by the American Thrombosis and Hemostasis Network (ATHN) will follow participants with haemophilia with or without inhibitors for four years from the time of enrolment. Each participant is assessed every three months. All data are collected into ATHN Systems. The primary outcome measure is the incidence of safety events as defined by the European Haemophilia Safety Surveillance (EUHASS) programme. Effectiveness will be described based on annualised bleeding rate, therapy utilisation, adherence, and patient-reported outcomes.

Conclusion
As the first product-agnostic, real-world study of haemophilia therapy in the United States, ATHN 7 collects data to determine current intervention safety and effectiveness. Based on this success, ATHN will continue to collect these data longitudinally through the ATHN Transcends study.
Living, Caring, Learning – The treatment centre as family for a woman with severe haemophilia
Authors: Bashari Dalia 
Published: May 2024

Abstract
A nurse at Israel’s National Hemophilia Center for over 35 years, Dalia reflects on lifelong relationships with patients and the ‘family approach’ to care in the context of her experience of caring for a woman with severe haemophilia A. Having cared for the patient since she was a young child, Dalia describes the difficulties she has faced and the importance of ongoing conversations about her life in shaping her care, including risks around pregnancy and having a child. The patient went on to have a son by caesarean section, covered by factor VIII and tranexamic acid; her son was diagnosed with severe haemophilia A at birth and Dalia now sees them both in clinic. The patient also contributes her view on the importance of the close therapeutic relationships she has with Dalia. While acknowledging the importance of setting boundaries, Dalia reflects on the role of the haemophilia centre as an extension of the patient’s family and the nurse as a ‘mother’ figure. She feels the centre’s family approach is reflected not only in the care team’s knowledge of their patients but also through close and effective working relationships between staff, built on experience sharing, discussion and mutual support. Dalia believes it is this combination that has made her centre so successful in its involvement in clinical trials.
Living, Caring, Learning - Changing mindsets and enabling goals for people with haemophilia
Authors: Cruickshank Anne-Louise 
Published: May 2024

Abstract
In a nursing career spanning almost five decades, Anne Louise has spent over 30 years caring for people with haemophilia in South Africa. She reflects on the importance of prophylaxis and how tailoring treatment to meet individual needs not only helps to prevent bleeds but can make goals and aspirations attainable. Describing her experience of how she supported a young man with severe haemophilia in achieving his ambition to become a paramedic, Anne-Louise demonstrates the importance of the nurse-patient relationship and the role of the nurse in providing individualised care. She discusses advocating for prophylaxis and the need to change mindsets, and highlights the need for further change in access to treatments for haemophilia in South Africa. The patient also describes his journey to achieving the level of fitness he needed to undertake the entrance exam to train as paramedic.
System change in practice: A report from the EHC Think Tank workstreams on Registries and Patient Agency
Authors: Gacser Zita , Skouw-Rasmussen Naja 
Published: May 2024

Abstract

Introduction
System change addresses the fundamental causes of persistent, complex problems to achieve large-scale, sustainable solutions at multiple levels. Recognising the need for system change to ensure equitable access to healthcare for people with bleeding disorders and other rare diseases, the European Haemophilia Consortium (EHC) established a Think Tank to work alongside its traditional advocacy initiatives. The Think Tank has mobilised a broad range of healthcare stakeholders to identify challenges and co-create potential solutions through a series of thematic workstreams exploring specific aspects of the healthcare system. This paper reports on outcomes and learnings from the Registries and Patient Agency workstreams.

Methodology/Process
During a series of online meetings and face-to-face discussions, workstream stakeholders contributed to a three-phase process: 1. Discovery; 2. Strategy; 3. Innovation. Having identified key challenges to system change for Registries and Patient Agency, stakeholders mapped the system in which they were working to refine the challenges, recognise enablers and constraints to progress, and use leverage points to co-create strategies for change.

Results
The Registries workstream prioritised actions to address challenges around lack of common purpose and data quality, and agreed to move forward with developing a consensus statement to facilitate buy-in from key stakeholders, working on good governance for registries, hosting a network for registry owners, and creating a model for patient data input and feedback. A Registries Roadmap was completed for 2025 and 2030, and a project initiated to align registries in Europe. The Patient Agency workstream agreed actions should focus on challenges related to the role of the patient, recognising the need to elevate patient influence in all aspects of the healthcare system. Actions aimed to address the current stakeholder hierarchy and gaps in patient health literacy, and to optimise the potential of digital tools to enable patient contributions to patient-reported outcome and experience measures (PROMs and PREMs). Projects include developing a patient agency guidebook and a patient experience data (PED) dossier on von Willebrand disease, to provide a one-stop repository for regulators, researchers, clinicians and patients.

Conclusions
There is a clear need for system change to ensure equitable access to healthcare for people with rare diseases such as bleeding disorders. Bringing together multiple stakeholders with different and complementary knowledge and approaches has facilitated the development of innovative strategies for system change in relation to Registries and Patient Agency. Work has started on pilot projects to move these strategies forward.
A Multivariate Performance Analysis of the Plastics Manufacturers: Comparative Analysis of European Regions
Authors: Niftiyev Ibrahim , David Delia , Iordan Marioara , Horga Petru 
Published: May 2024

Abstract
This study evaluates the economic performance of plastics manufacturers in European regions (e.g., Western, Southern, Central and Eastern Europe, and the Baltic States) between 2017 and 2020 based on data from 3,372 companies using multivariate correspondence analysis (MCA) and Welch’s test. They were analyzed according to the indicators of profitability, sales (or turnover), employment, and total assets. The results of MCA show that Central and Eastern European companies are absolute leaders in terms of profitability. While Southern European companies have the highest total assets, their sales and profitability are lower compared to other regions. We found that Western European companies lead in terms of turnover and that the Baltic region is roughly on par with Central and Eastern European countries in terms of profitability and employment. These differences were also tested using the pairwise Welch’s test, which revealed highly statistically significant differences, especially in turnover and total assets. The results also show that profitability levels are similar regardless of company size, while sales and total assets are significantly different across European regions. These findings on plastics manufacturers in different European regions are crucial to help policymakers and industry leaders make informed decisions to address economic performance, investment and environmental concerns, and to develop sustainable solutions for the plastics industry.
Clustering Corporate Governance and Leadership. A Bibliometric Analysis
Authors: Țîmbalari Carolina , Neagoe Barbu Aida Lavinia , Cristian Mihai-Gabriel 
Published: May 2024

Abstract
Recently, researchers worldwide have shown a significant interest in bibliometric analysis, and it has proved to be a useful and valuable tool for aggregating data on our research. Our paper aims to explore bibliometric analysis in the framework of two critical aspects of organizational management and decision-making: corporate governance and leadership. To achieve this objective, 930 articles from Elsevier’s Scopus were analyzed, utilizing VOSviewer as a bibliometric tool. Furthermore, our research not only sheds light on the current state of scholarship in these fields, but also serves as a basis for future studies aiming to deepen our understanding of how corporate governance and leadership intersect and influence organizational success and sustainability.
Environmental Goods and Services: Developments of the Concept, the Economic Sector, and the Markets
Authors: Vrublevska Olena 
Published: May 2024

Abstract
Green (environmental) marketing, which promotes cleaner, less detrimental products, is considered to be one of the main contributors to sustainable production and consumption. With the latest EU policy initiatives aimed at acceleration of green transition, it deserves even more attention while the concept of environmental goods and services still remains a subject for discussion, and both comparative environmental impact of some of such products and the green demand probably are overestimated. The studies offer an approach to the theoretical concept of environmental goods and services providing the integrated vision through the prism of the ecological economics, national accounting, and marketing with the initial point of green (environmental) needs. To understand full potential of marketing for environmental sustainability, which is of growing importance, the studies address the sole purpose environmental products also as those which are beyond the green marketing efforts, but playing the equally important role. Production of environmental goods and services by the EU economy is analysed with special attention to groups of products by their primary purpose, and conclusions are drawn regarding the sustainability potential of different fields of marketing.
Strategy For Increasing Community Welfare With Business Successrural Society
Authors: Yuesti Anik , Suardhika Nengah , Swandewi Putu Ayu Meidha , Ituriaga Christian Angelo Barretto 
Published: May 2024

Objectives: Significant business success will have a direct impact on community welfare. Rural economic organizations are crucial yet often weak points in strengthening the rural economy. BUMDes (Village-Owned Enterprises) are designed to consolidate or strengthen village economic institutions. This research aims to analyze the influence of business capital and marketing strategies on community welfare, with business success serving as an intervening variable.

Methods: Data for this research was collected using a questionnaire instrument. The analysis was conducted using the Structural Equation Modeling - SEM PLS analysis technique. This approach allows for the examination of complex relationships between variables, specifically how business capital and marketing strategies affect community welfare through business success.

Results: The research results show that business capital and marketing strategies positively impact business success. Additionally, both business capital and marketing strategies positively influence public welfare. Furthermore, business success itself has a positive effect on public welfare. The study also finds that business success serves as an indirect mediating variable, enhancing the effect of venture capital and marketing strategies on public welfare.

Conclusion: The study concludes that business capital and marketing strategies are crucial for achieving business success, which in turn positively impacts community welfare. Business success acts as a significant intermediary, amplifying the positive effects of both venture capital and marketing strategies on the well-being of the community. This underscores the importance of investing in effective business strategies and sufficient capital to foster sustainable economic growth and improve public welfare.
Adoption of Accrual Accounting in the Brazilian Public Sector: a Case Study in Light of Regulation Theory
Authors: Santos Luciana Braga dos , Nunes André , Abreu Lucijane Monteiro de , Pantoja Maria Júlia 
Published: May 2024

Objective: To identify existing gaps in the adoption of full accrual accounting in the public sector, with a focus on analyzing the financial statements of the Ministry of Defense (MD), and to investigate the application of accrual accounting in the public sector, considering its complex regulations.

Theoretical Framework: For the analyses, the theoretical foundation is based on the theory of regulation applicable to accounting regimes in the public sector.

Methodology: The research, using the Ministry of Defense (MD) as a case study, adopted a multifaceted methodological approach, including a case study, literature review, and documentary analysis. Data sources included books, dissertations, scientific articles, and legislation. Documentary analysis focused on the MD's Financial Statements, accessed through the government portal, covering the years 2018 to 2022. The research also employed content analysis techniques, following the methodology suggested by Sampaio and Lycarião (2021), to evaluate the content of the information in relation to the established objectives.

Results and Conclusions: The research identified that there is already partial adherence of the public sector to international standards, as the cash basis is still observed for revenues, and areas for improvement were noted, such as the adoption of the Statement of Comprehensive Income in the context of the public sector.

Research Implications: It was observed that regulatory changes are important instruments for influencing the accountability processes of the public sector.

Originality/Value: The research emphasizes the partial adoption of international public accounting standards and suggests further discussions and analysis to achieve complete adherence, confirming a gap between the implementation of standards and their practical application.
The Development of Lucid Expressions of Preschool Children: A Study in Vietnam
Authors: Truong Anh Thi Thuy , La Ly Thi Bac , Nguyen Nga Thi Thu , Thi Phuong Ngo , Nguyen Thang The 
Published: May 2024

Objective: This article deals with the development of lucid expressions for 5- to 6-year-old preschool children in urban, mountainous, and rural areas.

Method: The methodology adopted for this research comprises imperical method. Data collection was carried out through questionnaires.

Results and Discussion: The results show that the children in the city area have a good level of lucid expression compared with the other two groups living in mountainous and rural areas. The lucid expression also shows that a good level of lucid expression is not only a sign that the psychological aspects of the child have improved and clearly developed in terms of quality, but also an extremely valuable piece, helping children to be confident when entering higher education levels.

Research Implications: There is a need for more in-depth studies on issues related to the development of lucid expressions, not only in the composition, characteristics, and structure of language, but also studies on the environment and other factors influencing factors, from which profound conclusions can be applied to the practice of language development.

Originality/Value: This study contributes to the practice by providing evidence of lucid speech development that can help teachers, educationists find suitable ways and aspects to help children have better expressions in their speeches.
The Reintegration of The Surfaces Affected by the Phenomenon of Subsidence through the Cultivation of Trees with High Energy Value
Authors: Itu Razvan Bogdan , Șoica Alexandra 
Published: May 2024

Objective: The objective of this study is to investigate the subsidence phenomena resulting from coal mining activities in Romania's Jiu Valley region, along with the environmental and socio-economic impact issues arising from subsidence in the Jiu Valley.

Theoretical Framework: The theoretical framework provides a comprehensive understanding of subsidence challenges in the Jiu Valley, Romania, and highlights the importance of proactive measures such as afforestation for addressing these challenges while promoting environmental sustainability and economic prosperity.

Method: The methodology adopted for this research involves a multidisciplinary approach integrating field surveys, geospatial analysis, environmental assessment, and stakeholder engagement.

Results and Discussion: The results of the paper underscore the effectiveness of afforestation as a sustainable solution for addressing subsidence challenges in the Jiu Valley, offering environmental, economic, and societal benefits for the region's long-term development and resilience. The work effectively highlights the concept of subsidence, both as a natural process and as a result of human activities such as mining. By emphasizing the negative effects of subsidence on land stability, infrastructure, and community safety, the introduction underscores the urgency of addressing this issue in regions such as the Jiu Valley.
Stakeholder Engagement and The Impact on Promoting Social Value: A Study In Businesses with a Social Mission
Authors: Picolli Icaro Roberto Azevedo , Alberton Anete , Schmitt Tatiani 
Published: May 2024

Objective: Analyze stakeholder engagement in promoting social value in businesses with a social mission.

Theoretical Framework: The theoretical framework integrates stakeholder theory, which observes the constant relationship between organizations and their stakeholders, seeking to understand stakeholder engagement in promoting social value in social businesses.

Method: It is a descriptive and qualitative study carried out in three businesses with a social mission in the area of education in Santa Catarina. The data was obtained through semi-structured interviews with managers and volunteer stakeholders, in addition to the analysis of three years of social reports. It was conducted using content analysis, with the help of NVivo software and approved by the ethics committee - 52507521.8.0000.0120.

Results and Discussion: The study highlights that businesses with a social mission depend on partnerships to promote social value, emphasizing the importance of collaboration with stakeholders through alliances and consultancies. These partnerships aim to increase effectiveness in responding to social challenges, especially in projects focused on education and training young people to face local social and economic issues. Social value is measured by the impact of these projects on the community, contributing to sustainable growth and improving the quality of life of young people.

Research Implications: This study expands the understanding of stakeholder engagement in businesses with a social mission, by defining and empirically applying its dimensions in the social context. The relevance of expanding theoretical and empirical knowledge to promote social value is highlighted.

Originality/Value: The study contributes to the literature by approaching social value in a holistic and empirically grounded way, defining and applying specific dimensions of stakeholder involvement in businesses with a social mission. This innovative approach highlights the importance of understanding and promoting social value in a more comprehensive and concrete way, thus contributing to the advancement of knowledge in this field.
Risk factors for carotid endarterectomy in the early period of stroke
Authors: Nekrasov D. A. , Chupalenkov S. M. , Lebedev I. A. , Kokuhin A. V. , Borodulin A. V. , Lazarev S. M. , Gavrilenko A. V. 
Published: May 2024

The OBJECTIVE was to identify significant risk factors of complications after carotid endarterectomy in the acute period of ischemic stroke, thus improving the outcomes of surgical treatment of symptomatic internal carotid artery stenosis.METHODS AND MATERIALS. The results of treatment of 776 patients after carotid endarterectomy in the acute period of stroke operated in the State Budgetary Institution of Tuberculosis «Regional Clinical Hospital № 2» were subjected to the factor analysis. catamnesis of the disease was traced for at least one year from the surgical intervention.RESULTS. Repeated ispilatory stroke occurred in 13 patients. Significant factors were tortuosity of the target artery (OR, 6.94; 95 % cI=2.21–21.86; p=0.003), aneurysm in the tortuosity zone (OR, 138.5; 95 % cI=11.6–1643.1; p=0.001), the presence of an electric cardiac pacemaker in the patient (OR, 31.71; 95 % cI=2.69–373.84; p=0.05), and need for IcA resection (OR, 6.83; 95 % cI=2.1–21.48; p=0.004). The risk factor for contralateral stroke in the early postoperative period was the use of a temporary intraluminal shunt (OR – 35.86; 95 % cI=2.17–592.92; p=0.05). Tortuosity of the target artery (OR – 4.6; 95 % cI=1.1–18.3; p=0.017), the need for IcA resection and in the presence of complicated atherosclerotic plaque in the reconstruction area (OR – 6.84; 95 % cI=1.89–24.85; p=0.01) turned out to be the sig nificant risk of death in the immediate postoperative period.CONCLUSIONS. Significant risk factors for recurrent stroke and death after carotid endarterectomy performed in the acute period of stroke were the tortuosity of the target artery, an aneurysm in the tortuosity zone, the presence of an electric cardiac pacemaker in the patient and the need for IcA resection in the presence of complicated atherosclerotic plaque in the reconstruction zone. The only risk factor for contralateral stroke in the early postoperative period was the use of a temporary intraluminal shunt. Further large trials are needed to clarify the obtained results.