1,720,958 research outputs found
Prise en charge of rare disorders patients and their families: a challenge for the general practitioner
No full textOrphan drugs: the challenges of availability and sustainability
No full textPrevalence data from the monitoring system established in Veneto Region, Italy, since 2002 allow a rough estimation of the costs related to orphan medical products for rare disorders patients. The impact on the regional and national system is not negligible due to the high costs of these treat- ments and to the increasing number of patients eligible to therapy. A chal- lenge concerning sustainability of this system in the near future is arisin
The role of a Registry in Familial Adenomatous Polyposis
No full textThe revolution in information technology has transformed the processes of collection, transmission, analysis, and storage of data, leading to the improvement of many large-scale systematic data-collection systems of health-related events. Familial adenomatous polyposis (FAP) represents a paradigmatic example of how the establishment of a data-collection system, starting from family tracing and evolving to more complex registration processes, increases knowledge on different aspects of the disease and ultimately can influence patients' clinical management and professionals'attitudes. Many years have passed since the establishment of the first polyposis registry at St Mark's Hospital in London. An historical overview of FAP registries is presented, discussing potentials and limitations of population-based registries versus clinical registries. In the context of recently developed health policies on rare diseases, the experience of a registry monitoring FAP as well as other rare conditions, population-based, and at the same time with features of a clinical one, is presented. The value of FAP registries relies on their ability to provide a snap-shot of aspects of disease as well as of its management, producing evidence and translating this into clinical practice. Our belief is that such registries, really patient-centered, should be developed as an integral part of the healthcare network, becoming connecting informative tools between vertical networks, namely centers of expertise, horizontal care networks, and other institutions and persons involved in the care of FAP patients
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
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