Health-Related Communication and Rare Diseases

Rare diseases are often characterized as diseases with low prevalence in population that stem from genetic disorders or environment conditions. As a result of its low prevalence and lack of knowledge of its causes, symptoms, and/or treatment, patients' access to healthcare, and their quality of life may be affected. A key challenge is also the physician-patient interaction that differs from traditional medical care settings by demanding physicians' experience in dealing, for example, with psychological problems associated with the diagnosis process. Information and Communication Technologies can facilitate the interaction between the sources of information and patients, overcoming geographical distances. This chapter discusses the role of Information and Communication to extract health data in rare diseases and reinforce physician-patient interactions. It argues that Information and Communication are crucial to meet patients' needs, drivers, and decision-making that tend to occur during the patient's journey (pre-diagnosis, diagnosis, and post-diagnosis).

Genomes of keystone Mortierella species lead to better in silico prediction of soil mycobiome functions from Taiwan's offshore islands

The ability to correlate the functional relationship between microbial communities and their environment is critical to understanding microbial ecology. There is emerging knowledge on island biogeography of microbes but how island characteristics influence functions of microbial community remain elusive. Here, we explored soil mycobiomes from nine islands adjacent to Taiwan using ITS2 amplicon sequencing. Geographical distances and island size were positively correlated to dissimilarity in mycobiomes, and we identified 56 zero-radius operational taxonomic units (zOTUs) that were ubiquitously present across all islands, and as few as five Mortierella zOTUs dominate more than half of mycobiomes. Correlation network analyses revealed that seven of the 45 hub species were part of the ubiquitous zOTUs belonging to Mortierella, Trichoderma, Aspergillus, Clonostachys and Staphylotrichum. We sequenced and annotated the genomes of seven Mortierella isolates, and comparative predictions of KEGG orthologues using PICRUSt2 database updated with new genomes increased sequence reads coverage by 62.9% at the genus level. In addition, genes associated with carbohydrate and lipid metabolisms were differentially abundant between islands which remained undetected in the original database. Predicted functional pathways were similar across islands despite their geographical separation, difference in differentially abundant genes and composition. Our approach demonstrated the incorporation of the key taxa genomic data can improve functional gene prediction results and can be readily applied to investigate other niches of interests.

Surnames in south-eastern France: structure of the rural population during the 19th century through isonymy

An analysis of the distribution of surnames through time and space allows us to understand the structure of human groups, their exchanges or even their possible isolation. The French population has already been studied through surnames and it has been shown that the Sud-Provence-Alpes-Côte d’Azur region differed from the rest of France in both the 20th and 21st centuries (Mourrieras et al., 1995; Scapoli et al., 2005). The objective of this study was to understand the population evolution and particularities of the Sud-Provence-Alpes-Côte d’Azur region through an analysis of the distribution of surnames over an earlier period: the 19th century. For this work, 806,069 birth records from 521 communes between 1810 and 1890 were recorded and a total of 23,340 surnames were collected. The estimation of various isonymic parameters has allowed a description of this corpus never exploited before. In order to appreciate the population evolution, the data set was divided into three periods of 25 years. The canton was the geographical unit of this study, and similarities and differences between each of them were evaluated using Lasker distances, which allow the construction of dendrograms. A positive and significant correlation (p<0.0001) was found between Lasker distances and geographical distances using the Mantel test. The lowest inbreeding estimates were found in the Durance Valley. Migration, estimated from the v-index of Karlin and McGregor (1967), showed higher values in the south-western quarter of the region. The decrease in Rst values across the three periods is consistent with a homogenization of the patronymic between the cantons. This three-period approach showed a population evolution influenced by linguistic, cultural, historical and migratory phenomena since the Middle Ages, disrupted by the socioeconomic changes of the 19th century.

Flow Assurance and Thermodynamic Challenges of operating CO2 Pipelines for variations in terrains and environments

The requirement for capturing and storing Carbon Dioxide will continue to grow in the next decade and a fundamental part of this is being able to transport the fluid over large geographical distances in numerous terrains and environments. The evolving nature of the fluid supply and the storage characteristics ensure the operation of the pipeline remains a challenge throughout its operational life. This paper will examine the impact of changes in the fluid composition, storage locations, ambient conditions and the various operating modes the pipeline will see throughout the lifecycle, highlight the technical design and operational challenges and finally give guidance on future developments. The thermodynamic behaviour of CO2 with and without impurities will be demonstrated utilising the fluid characterisation software, MultiflashTM. The fluid behaviour and hydraulic performance will be calculated over the expected operational envelope of the pipeline throughout field life, highlighting the benefits and constraints of using the single component module in OLGATM whilst comparing against a compositional approach when dealing with impurities. The paper will demonstrate through two case studies of varying nature including geographical environment, storage location (aquifer vs. abandoned hydrocarbon reservoir) and ambient conditions, the following issues: The impact of the storage type on the pipeline operations and how this will evolve with time; The environmental conditions and the impact these have on selection of process equipment and operational procedures (i.e. shutdown); and The impact the CO2 composition has on the design of the CO2 pipeline, and The paper will conclude with a set of guidelines for undertaking design analysis of CO2 pipelines for variations in fluid composition, storage locations and ambient conditions as well as some key operational strategies. This paper utilises the current state of the art tools and how these evolving tools are making this technically challenging area more mainstream.

Statistical influence of travelling distance on home advantage over 57 years in the men’s German first soccer division

A statistical analysis is presented that investigates the dependence of team cities’ geographical distances on the effect of home advantage (HA) for 57 years of the men’s German first soccer division (“Bundesliga”), including 17,376 matches (seasons starting from 1964 to 2020). The data shows that the HA can clearly be evidenced in the past and present (statistical p‑value < 0.01) and that it also exists for negligible distances (p < 0.01). The HA and the influence of distance on the HA both significantly decreased gradually over the last decades (p < 0.01). For the first and only time, the HA reversed into an away advantage (AA) for the season 2019/2020 (p < 0.01). The influence of distance on HA has been significant (p < 0.01) in the past (before about 1990) and contributed roughly by about half, compared to a situation without HA or AA. It increases with distance and saturates at around 100 km. Such saturation behaviour is in line with results from higher divisions of other countries with similar travelling distances such as Italy, Turkey and England. However, the distance-dependent contribution to HA has been approximately halved and reduced to an insignificant amount today. Furthermore, the temporal HA reduction is significantly larger for large distances compared to short distances (p < 0.01). Reporting and quantifying a reduction (p < 0.01) of the distance-dependent contribution to HA over a time span of 57 years is novel.

ULOGA MEDIJA U OSTVARIVANjU PREDSTAVNIČKE FUNKCIJE NARODNE SKUPŠTINE REPUBLIKE SRBIJE

With the emergence and development of new information and communications technologies, true, timely and complete information, as well as one’s guaranteed right to it, becomes an extremely powerful means. Also, the inevitable and omnipresent globalization process implies a picture of the world as a joint space in which the technological, political, economic and ecological threads of interdependence are woven at great speed, thereby negating geographical distances and making the democratic form of government universal. Today, media are the keepers of democratic legal and political systems of modern countries. They represent the main communications channel between the National Assembly and the citizens and the most significant means of informing the citizens about public affairs. In order for the citizens to freely elect their representatives and take part in the making of the most important decisions and the creation of policies, it is necessary that they have freedom of expression and that true, timely and complete information is made available to them, which includes information about the representative candidates, the elections procedure, the elections results, as well as the actions of their representatives during their term in office.

Managing the great bullwhip effects caused by COVID-19

Purpose This study aims to answer the question of how firms can deal with the great bullwhip effects caused by COVID-19? Design/methodology/approach An exploratory research method has been adopted and evidence was collected based on 41 online interviews. Findings The study finds that the bullwhip effect is caused by the sudden changes in customers purchasing behaviour during the pandemic and the businesses’ inaccurate anticipation of the situation. Managing the bullwhip effects caused by COVID-19 requires situation awareness, localisation and an intelligent supply chain. Situation awareness is a vital concept in emergency response, knowing what is going to figure out what should be done. Furthermore, reducing the geographical distances between the firm and other parties in the supply chain, which equates to supply chain localisation, enforces just-in-time inventory. Finally, supply chain digitalisation is no longer an option; implementing such a solution enables end-to-end visibility, collaboration, flexibility and optimisation of orchestration of the supply chain. Research limitations/implications This study presents indicators explaining how organisations can deal with the great bullwhip effects caused by COVID-19. Originality/value The ongoing outbreak of the COVID-19 pandemic has brought about significant challenges for supply chain management, and this study contributes to the body of knowledge and proposes a model of reducing the bullwhip effects.

Pseudomonas sp. a Dominant Population of Bacteria in the Cold Water of Mount Sabalan Crater ‎Lake

Background: Sabalan (Savalan) Lake is a stable crater lake locating at the summit of Sabalan, an inactive stratovolcano and the third highest mountain of Iran. Because of cold weather conditions, the lake is frozen in most months of the year. The biodiversity of microbial flora in this area needs to be explored to find its similarity with the arctic regions’ biodiversity. Objective: The psychrophilic bacterial population of Sabalan (Savalan) Crater Lake was identified. The current research is the first report of aquatic bacterial strains isolation and characterization from Sabalan Lake. Methods: Water sample collections were cultured on four different media, then colonies were isolated by the plating method. The phylogenetic features of the isolates were scrutinized and finally, the phenotypic characteristics were investigated using specific culture methods. Results: The results of morphological tests indicated that most isolates were Gram-negative and rod shape, which were able to grow between ˗4 and +37 ºC.‎ According to the phylogenetic analysis the isolated strains belong to Pseudomonas, Yersinia, Kocuria, and Micrococcus genera and about 60% of the isolates belong to the various species of Pseudomonas as a ‎dominant genus with abounded frequency. ‎In addition, several isolates showed 99% similarity with bacteria, which were previously isolated from Antarctic regions such as Pseudomonas antarctica and Micrococcus antarctica. Conclusion: It can be concluded that the microbial populations of cold areas is the same across the geographical distances. In addition, these bacterial strains could be a primitive source of new enzymes for technological applications such as biosurfactant production.

Systems of Care in Cardiogenic Sock

Outcomes for cardiogenic shock (CS) patients remain relatively poor despite significant advancements in primary percutaneous coronary interventions (PCI) and temporary circulatory support (TCS) technologies. Mortality from CS shows great disparities that seem to reflect large variations in access to care and physician practice patterns. Recent reports of different models to standardize care in CS have shown considerable potential at improving outcomes. The creation of regional, integrated, 3-tiered systems, would facilitate standardized interventions and equitable access to care. Multidisciplinary CS teams at Level I centers would direct care in a hub-and-spoke model through jointly developed protocols and real-time shared decision making. Levels II and III centers would provide early access to life-saving therapies and safe transfer to designated hub centers. In regions with large geographical distances, the implementation of telemedicine-cardiac intensive care unit (CICU) care can be an important resource for the creation of effective systems of care.

Information Seeking Behavior and Utilization of Social Media for Agricultural Information by Farmers of Prayagraj District of Uttar Pradesh

Social media is becoming very important implement in agriculture to edge people to people due to its capacity to connect with farmers and agribusiness people around the globe over hug geographical distances. At present time there are 2.078 billion social media user in the world. The study was conducting in purposely selected Prayagraj district of Uttar Pradesh of also purposely two selecting blocks two villages from each block. Selected for the study Thus, in all, four villages thirty farmers were selected randomly. Thus, total 120 respondents were selected randomly and interviewed with the help of well semi structured schedule. The statistical tools/technique was used to computing the data and information. Descriptive research design was followed for the analysis. Maximum number respondents communicate through social media and WhatsApp is highly exposed and adopted by the respondents in the study area. Smart phones, computer usage and internet should be promoted among stakeholders (esp. farmers).majority of the respondents information getting through Kisan SMS Portal. The highest utilization level of the respondents about social media programme was WhatsApp with a weighted mean score of 1.58 and it was ranked first, followed by the Kisan SMS Portal a weighted mean score was 1.43 with ranked was second, while YouTube was ranked third and so on.