Access Rules Research Articles

PH Roundtable: Disparities in PH

PH Roundtable: Disparities in PH

Electronic diaries in the management of haemophilia gene therapy: Perspective of an expert group from the German, Austrian and Swiss Society on Thrombosis and Haemostasis (GTH).

Gene therapy (GT) is becoming a realistic treatment option for patients with haemophilia. Outside clinical trials, the complexity and potential complications of GT will pose unprecedented challenges to haemophilia care centres. To explore the potential use of electronic tools to improve the delivery of GT under real-world conditions. Considering the hub-and-spoke model, the GTH working group on GT considered the entire patient pathway and reached consensus on requirements for an integrative software tool to secure documenting and sharing information between treaters, pharmacies and patients. Six steps of the gene therapy process were identified, each requiring completion of the previous step as a prerequisite for entry. The responsibilities of GT dosing and follow-up treatment centres, read/write access rules, and the minimum data set were outlined. Data contributed by patients through mobile devices was also considered. Important information needs to be shared between patients and treatment centres in a real-world GT hub-and-spoke model. Collecting and sharing this information in well-organised electronic applications will not only improve patient care but also enable national and international data collection in clinical registries.

Research on access rules and flexibility evaluation index system of ancillary service market in China

In high renewable energy penetrated power systems, the flexibility of power system resources is indispensable. With the implementation of domestic ancillary service markets, the revenue of ancillary services provided by generating units is gradually changing from the planned mode to the market mode. Moreover, the access threshold for generating units to participate in the ancillary service market has changed. At the same time, the flexibility of generating units has a great impact on the revenue of the ancillary service market. Therefore, this paper summarizes the flexibility requirements of typical pilot areas in China for generating units to participate in ancillary service markets. Then, the corresponding flexibility evaluation indexes of different ancillary services are sorted out and the flexibility evaluation model is developed to evaluate the flexibility ability of power generation enterprises scientifically. The flexibility evaluation system proposed in this paper can effectively evaluate the flexibility capability of generating units and conduct its flexibility enhancement.

Improving Preferential Market Access through Rules of Origin: Firm-Level Evidence from Bangladesh

In countries where there exist limited opportunities to source inputs locally, rules of origin undermine access to preferential trade agreements for final goods exporters. I analyze the 2011 revision to the rules of origin associated with the European Union’s Generalized System of Preferences, which allowed apparel producers in least developed countries to use internationally sourced textiles in exported products. Using transaction-level data on Bangladeshi apparel firms, I find that the rules of origin effectively cut the preferential margin by three-fourths. Liberalizing the rules of origin resulted in firm-level revenue growth, which was driven by the intensive margin through increased shipment sizes and quality upgrading. (JEL F13, F14, L67, O14, O19)

Utilizing multi-level concepts for multi-phase modeling

In model-based systems engineering projects, engineers from multiple domains collaborate by establishing a common system model. Multi-level modeling is a technique that can be used to model the development from abstract ideas to concrete implementations. However, current multi-level modeling approaches are not adequate for processes with multiple modeling phases that might have to be rearranged later. In this paper, we introduce multi-phase modeling that utilizes concepts of multi-level modeling by considering a description of the expected phase ordering per domain. Constraints aware of this context can express that certain elements are only valid in specific phases without having to determine a concrete phase ordering for a particular model. This enables using multi-phase modeling in flexible workflows, adapting to changing requirements and the definition of access rules in domain notation. We show feasibility of this multi-phase modeling by applying it to multiple real-life systems engineering projects of the aerospace domain.

Data sources for drug utilization research in Latin American countries-A cross-national study: DASDUR-LATAM study.

Drug utilization research (DUR) contributes to inform policymaking and to strengthen health systems. The availability of data sources is the first step for conducting DUR. However, documents that systematize these data sources in Latin American (LatAm) countries are not known. We compiled the potential data sources for DUR in the LatAm region. A network of DUR experts from nine LatAm countries was assembled and experts conducted: (i) a website search of the government, academic, and private health institutions; (ii) screening of eligible data sources, and (iii) liaising with national experts in pharmacoepidemiology (via an online survey). The data sources were characterized by accessibility, geographic granularity, setting, sector of the data, sources and type of the data. Descriptive analyses were performed. We identified 125 data sources for DUR in nine LatAm countries. Thirty-eight (30%) of them were publicly and conveniently available; 89 (71%) were accessible with limitations, and 18 (14%) were not accessible or lacked clear rules for data access. From the 125 data sources, 76 (61%) were from the public sector only; 46 (37%) were from pharmacy records; 43 (34%) came from ambulatory settings and; 85 (68%) gave access to individual patient-level data. Although multiple sources for DUR are available in LatAm countries, the accessibility is a major challenge. The procedures for accessing DUR data should be transparent, feasible, affordable, and protocol-driven. This inventory could permit a comparison of drug utilization between countries identifying potential medication-related problems that need further exploration.

Utilizing Blockchain for Electronic Wellbeing Records

Blockchain has been an interesting area of ​​exploration for some time and the advantages it provides have been exploited by a variety of different businesses. Basically, the medical service area has benefited greatly from blockchain innovations due to safety, security, confidentiality and decentralization. Overall, the Electronic Wellbeing Record (EHR) system addresses issues related to information security, honesty and fairness. In this paper, we talk about how blockchain innovation can be used to change the EHR framework and can be the answer to this problem. We present a system that can be used for the implementation of blockchain innovations in the field of medical services for EHR. The essence of our proposed system is first and foremost to implement blockchain innovations for EHR and in addition to provide secure electronic records capacity by characterizing granular access rules for clients of the proposed structure. Moreover, this structure also speaks to the flexibility issue that blockchain innovation sees as a whole through the use of the off-chain capacity of the record. This structure gives the EHR framework the advantage of having a blockchain-based setup that is versatile, secure, and basic. The information on the blockchain is apparent to everybody that is available on the chain this makes the information weak which is anything but an ideal result for a decentralized stage.

El fortalecimiento de la normativa de la autoridad nacional de transparencia como estrategia de lucha contra la corrupción en la administración pública

This article tries to analyze the need to strengthen the National Authority for Transparency and Access to Public Information´ regulations in order to convert it into a specialized public body with a high degree of independence that grants it greater operational capacity in order to face the problems related to non-compliance with the rules of transparency and access to public information and follow with the recommendations of international organizations such as the Organization of American States, the Organization for Economic Cooperation and Development and the Access of information Model Law; all of this as an strategy to fight corruption in the Public Administration because the attention to requests for access to public information allow citizen participation in the public administration acts.

Absolute subjective law - a vanishing copyright paradigm? Communication of works or access rules or maybe the rules of transaction? A report from the research in progress - outline

Absolute subjective law - a vanishing copyright paradigm? Communication of works or access rules or maybe the rules of transaction? A report from the research in progress - outline

Construction of Data Access Rules for Connected Cars

The connected car has become another Internet portal after the mobile phone, and the problem of data access of the connected car has become increasingly prominent. Vehicle data access involves issues such as data security, enterprise competition, service innovation, etc. The concept of "extended vehicle" proposed by original equipment manufacturers obtains data control rights on the grounds of security, and "factual control" of data through technical measures enables it to A situation of "exclusive control" over automotive data results in less competition, less consumer choice and less innovative services. Therefore, it is necessary to return the control of car data from "car manufacturers" to "connected car users", and the mode of data access changes from "proprietary server" to "shared server" or "in-vehicle application platform".

Towards a Common Agricultural Data Space in the European Union: A Sustainable Development Perspective

In February 2020 the European Commission announced a new strategy for data in which an innovative proposal to create a single European data space composed of many sectoral common data spaces, including the agriculture sector, was presented. It is expected that the common agricultural data space will provide support for delivering a smart, innovative and sustainable agri-food system from farm to fork. Based on the analysis of framework conditions for pooling and sharing agricultural data in the EU and the Commission’s initiatives in this area, this article aims to discuss how and to what extent the common data space in agriculture could contribute to environmental, economic and social sustainability in the EU. It was concluded that the achievement of sustainability goals with the help of the planned common data space remains challenging, particularly in the context of rapid, but uneven pace of digital transformation in the agri-food sector in the EU. Overcoming legal, technical and other barriers to data sharing in the EU will not remove the fundamental problems of limited representativeness of current agricultural data assets in the EU. The design of the common data space in agriculture as well as the rules for data access and use should therefore be carefully considered. Also, specific and datarelated intervention measures, e.g. under the CAP, would be needed both to decrease the problem of a fragmented farm data landscape and to respond to the growing needs to collect and share private farm data that are highly relevant to achieving broader social goals and sustainability.

Accessibility Guidelines for VR Games - A Comparison and Synthesis of a Comprehensive Set

Increasing numbers of gamers worldwide have led to more attention being paid to accessibility in games. Virtual Reality offers new possibilities to enable people to play games but also comes with new challenges for accessibility. Guidelines provide help for developers to avoid barriers and include persons with disabilities in their games. As of today, there are only a few extensive collections of accessibility rules on video games. Especially new technologies like virtual reality are sparsely represented in current guidelines. In this work, we provide an overview of existing guidelines for games and VR applications. We examine the most relevant resources, and form a union set. From this, we derive a comprehensive set of guidelines. This set summarizes the rules that are relevant for accessible VR games. We discuss the state of guidelines and their implication on the development of educational games, and provide suggestions on how to improve the situation.

Irreproducibility in searches of scientific literature: A comparative analysis.

Repeatability is the cornerstone of science, and it is particularly important for systematic reviews. However, little is known on how researchers’ choice of database, and search platform influence the repeatability of systematic reviews. Here, we aim to unveil how the computer environment and the location where the search was initiated from influence hit results.We present a comparative analysis of time‐synchronized searches at different institutional locations in the world and evaluate the consistency of hits obtained within each of the search terms using different search platforms.We revealed a large variation among search platforms and showed that PubMed and Scopus returned consistent results to identical search strings from different locations. Google Scholar and Web of Science's Core Collection varied substantially both in the number of returned hits and in the list of individual articles depending on the search location and computing environment. Inconsistency in Web of Science results has most likely emerged from the different licensing packages at different institutions.To maintain scientific integrity and consistency, especially in systematic reviews, action is needed from both the scientific community and scientific search platforms to increase search consistency. Researchers are encouraged to report the search location and the databases used for systematic reviews, and database providers should make search algorithms transparent and revise access rules to titles behind paywalls. Additional options for increasing the repeatability and transparency of systematic reviews are storing both search metadata and hit results in open repositories and using Application Programming Interfaces (APIs) to retrieve standardized, machine‐readable search metadata.

BRAINS 2020 special issue: Blockchain research and applications for innovative networks and services

BRAINS 2020 special issue: Blockchain research and applications for innovative networks and services

Synthetic accessibility and stability rules of NASICONs

In this paper we develop the stability rules for NASICON-structured materials, as an example of compounds with complex bond topology and composition. By first-principles high-throughput computation of 3881 potential NASICON phases, we have developed guiding stability rules of NASICON and validated the ab initio predictive capability through the synthesis of six attempted materials, five of which were successful. A simple two-dimensional descriptor for predicting NASICON stability was extracted with sure independence screening and machine learned ranking, which classifies NASICON phases in terms of their synthetic accessibility. This machine-learned tolerance factor is based on the Na content, elemental radii and electronegativities, and the Madelung energy and can offer reasonable accuracy for separating stable and unstable NASICONs. This work will not only provide tools to understand the synthetic accessibility of NASICON-type materials, but also demonstrates an efficient paradigm for discovering new materials with complicated composition and atomic structure.

Encounters on the Holy Mountain: Stories from Mount Athos

<i>Encounters on the Holy Mountain: Stories from Mount Athos</i>

Blockchain-based decentralized architecture for cloud storage system

Cloud storage system provides on-demand and pay-per-use storage model with low computing cost. However, this storage system suffers from various security risks. Blockchain technology is an advanced technique that stores data in a distributed manner, and the data, once stored, cannot be altered. Therefore, we propose a blockchain-based decentralized architecture for the cloud storage system. The proposed architecture includes access control and integrity checking mechanism to provide a more secure environment. Moreover, it provides four primary services to ensure security features in a cloud storage system: (i) A registration process is designed to register data owners and users using a key generation technique to provide an authentication feature; (ii) The data owners save the user data Meta details in the blockchain structure and set access rules to maintain the authorization feature; (iii) The cloud storage system stores the original data and uses the optimization algorithm to reduce the transaction processing time; (iv) Data owners maintain the data integrity using the Merkle root concept. The experimental results, analysis, and performance evaluation show that our proposed architecture provides a feasible and reliable cloud environment.

Patterns of Screen Time Parenting Practices among Parent-Adolescent Dyads Who Participated in a Cross-Sectional Internet-Based Study.

Background: Little is known about the simultaneous use of screen time (ST) parenting practices in children. Hence, study objectives were to determine patterns of ST parenting practices and associations with demographic, anthropometric, and sedentary behavior measures in parents and their adolescent children (12-17 years). Methods: Dyadic survey data from Family Life, Activity, Sun, Health, and Eating, a cross-sectional, internet-based study, conducted in 2014 were analyzed using latent class analysis on six ST parenting practices-permissive, rules/limits, monitoring, modeling, accessibility, and negotiated rules. Self-report model covariates included adolescent age and parent and adolescent sex, body weight category, and sedentary behavior. Results: Based on 1200 parent-adolescent dyads, five latent classes were identified representing a continuum of practice use (high to low)-Complete Influencers (16%, reference class), Disagreeing Influencers (18%), Positive Influencers (24%), Negative Influencers (23%), and Indifferent Influencers (20%). Disagreeing, Indifferent, and Negative Influencers were 50%-81% and 45%-49% less likely to contain younger adolescent dyads and male adolescent dyads, respectively. Dyads with adolescent overweight/obesity had twice the odds of belonging to one of the other four classes. Odds of belonging to one of the other four classes were 3%-9% lower for every 1 minute/day increase in adolescent sedentary behavior. Conclusions: Parents utilize distinct patterns of ST practices, which are differentially associated with adolescent age, sex, weight, and sedentary behavior. Advocating for parental use of combinations of practices, like rules/limits and monitoring, to decrease their adolescents' ST may prove more beneficial than no practice use.

(Re)Assembling Marine Space: Lobster Fishing Areas under Conditions of Technological and Legal Change in Atlantic Canada

Federal lobster fishing area (LFA) boundaries are part of the infrastructure controlling the temporal and spatial scale of lobster fishing in Atlantic Canada. Changes in the materiality of fishing and accompanying challenges to normative orders affecting access rules have together destabilized the spatial boundaries of LFAs. Changes in lobster distribution, gear innovations to fish in deeper waters, legal maneuverings over licensing, and competition with aquaculture for marine space all challenge LFA boundaries, which changes the distribution of fishing industry benefits and disrupts long-standing local values. Federal managers of the fishery struggle to deal with new assemblages of technology and law and how they interact with marine space. Examining the technology/legal pluralism nexus and their relationship with administrative lines in the water exposes how both affect more-than-human-spatial assemblages.

Correlation-aware replica prefetching strategy to decrease access latency in edge cloud

With the number of connected devices increasing rapidly, the access latency issue increases drastically in the edge cloud environment. Massive low time-constrained and data-intensive mobile applications require efficient replication strategies to decrease retrieval time. However, the determination of replicas is not reasonable in many previous works, which incurs high response delay. To this end, a correlation-aware replica prefetching (CRP) strategy based on the file correlation principle is proposed, which can prefetch the files with high access probability. The key is to determine and obtain the implicit high-value files effectively, which has a significant impact on the performance of CRP. To achieve the goal of accelerating the acquisition of implicit high-value files, an access rule management method based on consistent hashing is proposed, and then the storage and query mechanisms for access rules based on adjacency list storage structure are further presented. The theoretical analysis and simulation results corroborate that CRP shortens average response time over 4.8%, improves average hit ratio over 4.2%, reduces transmitting data amount over 8.3%, and maintains replication frequency at a reasonable level when compared to other schemes.