1,721,222 research outputs found
The lived experience of haemophilia and impact of gene therapy on the haemophilia patient community and their families : the Exigency programme
Full text linkGene therapy has the potential to change the lives of people with haemophilia, offering, if not a complete cure, then a significant reduction in treatment burden and an improvement in overall quality of life. Little is known, however, about the lived experiences of those who have undergone gene therapy or the impact on the haemophilia community and their families. The Exigency programme is the first comprehensive study to examine these psychosocial aspects.
The nine papers presented here as evidence for this PhD by Published Work are the results of a five-year mixed methods study programme examining the experiences of 69 participants across five distinct cohorts: those who had undergone gene therapy, those who do not want it, those who had withdrawn or were withdrawn from trials, those who have not yet been offered therapy, and parents of children with haemophilia. Data were collected through interviews, focus groups, and surveys. Three main themes were identified.
Safety and efficacy concerns dominated many of the discussions across all the cohorts, especially regarding the side effects of immunosuppressive medication and treatment durability. Identity also emerged as a key factor, with some considering their haemophilia an essential part of their sense of self, leading to complex responses to the idea of a "cure." Expectations varied widely; some saw gene therapy as transformative, while others felt it increased rather than reduced their treatment burden. The programme, therefore, highlights significant unmet psychosocial needs that have not been previously recognised or addressed.
All papers have been published in specialised journals and have directly influenced clinical practice guidelines, highlighting the need for wide-ranging psychosocial support throughout the gene therapy journey. The research also demonstrates that the impact of gene therapy extends beyond just clinical outcomes, affecting individual and family identity, relationships
and quality of life
Going Beyond Counting First Authors in Author Co-citation Analysis
Full text linkThe present study examines one of the fundamental aspects of author co-citation analysis (ACA) - the way co-citation
counts are defined. Co-citation counting provides the data on which all subsequent statistical analyses and mappings
are based, and we compare ACA results based on two different types of co-citation counting - the traditional type that
only counts the first one among a cited work's authors on the one hand and a non-traditional type that takes into
account the first 5 authors of a cited work on the other hand. Results indicate that the picture produced through this non-traditional author co-citation counting contains more coherent author groups and is therefore considerably clearer. However, this picture represents fewer specialties in the research field being studied than that produced through the traditional first-author co-citation counting when the same number of top-ranked authors is selected and analyzed. Reasons for these effects are discussed
Variations on the Author
Full text link“Variations on the Author” discusses two of Eduardo Coutinho’s recent films (Um Dia na Vida, from 2010, and Últimas Conversas, posthumously released in 2015) and their contribution to the general question of documentary authorship. The director’s filmography is characterized by a consistent yet self-effacing form of authorial self-inscription: Coutinho often features as an interviewer that rather than express opinions propels discourses; an interviewer that is good at listening. This mode of self-inscription characterizes him as an author who is not expressive but who is nonetheless markedly present on the screen. In Um Dia na Vida, however, Coutinho is completely absent form the image, while Últimas Conversas, on the contrary, includes a confessional prologue that moves the director from the margins to the center of his films. This article examines the ways in which these works stand out in the filmography of a director who offers new insights into the notion of cinematic authorship
Appropriate Similarity Measures for Author Cocitation Analysis
Full text linkWe provide a number of new insights into the methodological discussion about author cocitation analysis. We first argue that the use of the Pearson correlation for measuring the similarity between authors’ cocitation profiles is not very satisfactory. We then discuss what kind of similarity measures may be used as an alternative to the Pearson correlation. We consider three similarity measures in particular. One is the well-known cosine. The other two similarity measures have not been used before in the bibliometric literature. Finally, we show by means of an example that our findings have a high practical relevance.information science;Pearson correlation;cosine;similarity measure;author cocitation analysis
Dispelling the Myths Behind First-author Citation Counts
Full text linkWe conducted a full-scale evaluative citation analysis study of scholars in the XML research field to explore just how different from each other author rankings resulting from different citation counting methods actually are, and to demonstrate the capability of emerging data and tools on the Web in supporting more realistic citation counting methods. Our results contest some common arguments for the continued
use of first-author citation counts in the evaluation of scholars, such as high correlations between author rankings by first-author citation counts and other citation
counting methods, and high costs of using more realistic citation counting methods that are not well-supported by the ISI databases. It is argued that increasingly available digital full text research papers make it possible for citation analysis studies to go beyond what the ISI databases have directly supported and to employ more
sophisticated methods
koamabayili/VECTRON-author-checklist: VECTRON author checklist
No full textWe have done our best to complete the author checklist relating to the use of animals in the hut study. Note that the objective for the hut study was to evaluate the IRS treatment applications for residual efficacy against Anopheles mosquitoes, including the local An. coluzzii mosquito population. Cows were only used to attract mosquitoes into the huts and no tests were carried out directly on the cows. The author checklist is intended for use with studies where experiments are carried out on animals, which is why we have had such difficulty in completing this for the hut study, as many of the questions do not relate to how the cows were used
Author-wise bibliometric analysis based on entropy.
No full textAuthor-wise bibliometric analysis based on entropy.</p
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