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Introduction: Dravet syndrome (DS) is a rare developmental and epileptic encephalopathy. This study estimated cost, cost-driving factors and quality of life (QoL) in patients with Dravet syndrome and their caregivers in a prospective, multicenter study in Germany.
Methods: A validated 3–12-month retrospective questionnaire and a prospective 3-month diary assessing clinical characteristics, QoL, and direct, indirect and out-of-pocket (OOP) costs were administered to caregivers of patients with DS throughout Germany.
Results: Caregivers of 93 patients (mean age 10.1 years, ±7.1, range 15 months–33.7 years) submitted questionnaires and 77 prospective diaries. The majority of patients (95%) experienced at least one seizure during the previous 12 months and 77% a status epilepticus (SE) at least once in their lives. Over 70% of patients had behavioural problems and delayed speech development and over 80% attention deficit symptoms and disturbance of motor skills and movement coordination. Patient QoL was lower than in the general population and 45% of caregivers had some form of depressive symptoms. Direct health care costs per three months were a mean of €6,043 ± €5,825 (median €4054, CI €4935-€7350) per patient. Inpatient costs formed the single most important cost category (28%, €1,702 ± €4,315), followed by care grade benefits (19%, €1,130 ± €805), anti-epileptic drug (AED) costs (15%, €892 ± €1,017) and ancillary treatments (9%, €559 ± €503). Total indirect costs were €4,399 ±€ 4,989 (median €0, CI €3466-€5551) in mothers and €391 ± €1,352 (median €0, CI €195-€841) in fathers. In univariate analysis seizure frequency, experience of SE, nursing care level and severe additional symptoms were found to be associated with total direct healthcare costs. Severe additional symptoms was the single independently significant explanatory factor in a multivariate analysis.
Conclusions: This study over a period up to 15 months revealed substantial direct and indirect healthcare costs of DS in Germany and highlights the relatively low patient and caregiver QoL compared with the general population.
Global Histories and Cultures of Statehood, libro editado por John L. Brooke, Julia Strauss y Greg Anderson, es una propuesta interesante de reflexión interdisciplinaria sobre las formaciones estatales en un marco temporal amplísimo: desde la Antigüedad hasta el siglo XX. Los capítulos que componen el libro fueron presentados en un programa de dos años en la Universidad Estatal de Ohio. La publicación es claramente el producto de un ejercicio de discusión colectiva de una red académica con sede en los Estados Unidos y, por tal motivo, la mayoría de sus miembros pertenecen a instituciones académicas en este país. ...
Circular RNAs (circRNAs), an important class of regulatory RNAs, have been shown to be the most prevalent in the brain compared with other tissues. However the processes governing their biogenesis in neurons are still elusive. Moreover, little is known about whether and how different biogenesis factors work in synchrony to generate neuronal circRNAs. To address this question, we pharmacologically inhibited the spliceosome and profiled rat neuronal circRNAs using RNA sequencing. We identified over 100 circRNAs that were up-regulated and a few circRNAs that were down-regulated upon spliceosome inhibition. Bioinformatic analysis revealed that up-regulated circRNAs possess significantly longer flanking introns compared with the un-changed circRNA population. Moreover, the flanking introns of up-regulated circRNAs harbor a higher number of distinct repeat sequences and more reverse complementary motifs compared with the unchanged circRNAs. Taken together, our data demonstrate that the biogenesis of circRNAs containing distinct intronic features becomes favored under conditions of limited spliceosome activity.
Every now and again, one is overcome by a sense of utter disbelief. How can it be that some conventional narratives are still so persistent and influential in this day and age? In fact, they are so pervasive that one feels compelled to put pen to paper in order to combat them. Among these narratives, we find the tale of cultural evolution, where law plays a fundamental role as an instrument for rationalizing archaic societies. Having rejected this kind of historiography in his last essay on the early history of law (ZRG RA 127, 1–13), the late Raymond Westbrook instead postulated new paradigms. Moving in the same direction, Philipp Ruch thwarts this story of civilizing progress in a twofold manner: In his eyes, honor and vengeance are not the anthropological factors that law has to contain in order to create civilization. According to Ruch, and the main thrust of his 2016 dissertation, it was in fact law in the context of honor and vengeance that produced emotionality. ...
The synthesis of polynitrogen compounds is of fundamental importance due to their potential as environmentally-friendly high energy density materials. Attesting to the intrinsic difficulties related to their formation, only three polynitrogen ions, bulk stabilized as salts, are known. Here, magnesium and molecular nitrogen are compressed to about 50 GPa and laser-heated, producing two chemically simple salts of polynitrogen anions, MgN4 and Mg2N4. Single-crystal X-ray diffraction reveals infinite anionic polythiazyl-like 1D N-N chains in the crystal structure of MgN4 and cis-tetranitrogen N44− units in the two isosymmetric polymorphs of Mg2N4. The cis-tetranitrogen units are found to be recoverable at atmospheric pressure. Our results respond to the quest for polynitrogen entities stable at ambient conditions, reveal the potential of employing high pressures in their synthesis and enrich the nitrogen chemistry through the discovery of other nitrogen species, which provides further possibilities to design improved polynitrogen arrangements.
Kunstmekka und kitschig-schöne Serenissima : Teil 1/2: Rundgang über die 58. Biennale in Venedig
(2019)
Ein guter Grund alle zwei Jahre in die Serenissima zu reisen ist ihre Kunstbiennale. Seit über 100 Jahren, genauer seit 1895, öffnet von Mai bis November die größte Kunstschau der Welt in Venedig ihre Pforten.
Die Biennale verteilt sich auf mehrere Ausstellungsorte. Da sind die Giardini, ein für venezianische Verhältnisse großzügiger Park und zudem die einzige Grünanlage der Stadt. Sie beherbergen neben dem Zentralpavillon auch 28 nationale Länderpavillons, darunter einen deutschen Pavillon. 1999 kam aus Platzgründen das Arsenale, die Schiffswerft des ehemaligen Militärhafens, als Ausstellungsfläche hinzu. Zusätzlich verteilen sich weitere Länderpavillons und Ausstellungen über die Stadt, in angemieteten Etagen verschiedener Palazzi. Letztere zeigen sich zumeist als sehenswerte Architektur. Nicht selten lassen sich dort Kronleuchter aus Muranoglas, wertvolle Stofftapeten oder Wandmalereien sowie monumentale und reichverzierte Treppen bewundern.
May You Live in Interesting Times lautet der Titel, den der Amerikaner Ralph Rugoff, diesjähriger Kurator für die zentrale Ausstellung, der 58. Kunstbiennale gegeben hat. Die Besonderheit in diesem Jahr: Es stellen nur lebende Künstler aus und davon sind alle einmal sowohl in den Giardini als auch im Arsenale mit Werken vertreten. Die nationalen Länderpavillons haben jeweils eigene nationale Kuratoren und Künstler ausgewählt und bespielen ihre Häuser unabhängig vom Hauptmotto. Es kommen darüber hinaus auch noch viele sogenannte Kollateral-Ausstellungen in den berühmten Museen oder in bekannten Kirchen und Palazzi hinzu. Selbst ein einwöchiger Aufenthalt böte nicht genug Zeit, um alles zu sehen.
We investigate the default probability, recovery rates and loss distribution of a portfolio of securitised loans granted to Italian small and medium enterprises (SMEs). To this end, we use loan level data information provided by the European DataWarehouse platform and employ a logistic regression to estimate the company default probability. We include loan-level default probabilities and recovery rates to estimate the loss distribution of the underlying assets. We find that bank securitised loans are less risky, compared to the average bank lending to small and medium enterprises.
In this paper, we investigate the relation between buildings' energy efficiency and the probability of mortgage default. To this end, we construct a novel panel dataset by combining Dutch loan-level mortgage information with provisional building energy ratings that are calculated by the Netherlands Enterprise Agency. By employing the Logistic regression and the extended Cox model, we find that buildings' energy efficiency is associated with lower likelihood of mortgage default. The results hold for a battery of robustness checks. Additional findings indicate that credit risk varies with the degree of energy efficiency.
An album of 50 watercolour illustrations depicting Norfolk Island plants attributed to convict artist John Doody, in the early 1790s, and associated notes apparently written by William Paterson (1755-1810), one-time commander of the military detachment on Norfolk Island, Lieutenant Governor of New South Wales, and amateur botanist, are described and assessed. Illustrated are 48 plant species growing on Norfolk Island at the time, all but three of which are indigenous. The notes and the watercolours represent the only treatment of the island's flora in the 18th century and include descriptive and ecological material for the species at the time of first European occupation. Two of the species are now extinct. Paterson's notes also include an introductory description of the flora and fauna of the Island. The importance of this material to the modern study of the Norfolk Island flora is highlighted.