Rare diseases are defined, as any condition or disease having a low prevalence in the United States and the European Union. There is a scarcity of relevant knowledge and experience with rare diseases due to an incomplete understanding of the underlying disease mechanisms, relevant clinical endpoints, lack of correct diagnosis in the population. These challenges create a unique need for cooperation and infrastructure. Data registry is a critical tool in building a comprehensive knowledge base for these rare diseases. Our paper will provide the overview of patient registries for rare diseases, current use, limitations, challenges and proposed plan for improvement.
La producción literaria de Rimbaud no es un cuerpo de trabajo autónomo que pueda ser aislado del mundo revolucionario en el que está escrito. Lejos de ser un ejemplo de l ́art pour l ́art, su obra, tanto práctica como teórica, muestra el apoyo constante del poeta a los movimientos históricos radicales, en particular a la Comuna de París, que siguió muy de cerca. Rimbaud mostró especialmente un intenso interés en una crítica de gran alcance del trabajo. La figura de "l ́éclair" es uno de los loci donde el enlace entre su poética y su política es más visible. ; Rimbaud's literary production is not a self-contained body of work that can be isolated from the revolutionary world in which it is written. Far from an example of l ́art pour l ́art, his œuvre, both practical and theoretical, demonstrates the poet ́s consistent support for radical historical movements, notably the Paris Commune, which he followed closely. In particular, he sustained a strong interest in a far-reaching critique of work. The figure of "l ́éclair" is one of the loci where the link between his poetics and his politics is most visible.
The dissertation critically analyzes the response of a major research public university to the attacks of 9/11 in order to gain a deeper understanding of public universities' stance on the relevance of Middle East studies, particularly in the context of the serious and far-reaching impact of 9/11. The absence of an articulated position of the U. S. universities in recognizing this need suggests the perpetuation of the dominant discourses of power and centrality of Western knowledge in the academy—the discourses that historically led to the marginalization of Middle East studies in the U. S. universities during the Cold War period. The study, underpinned largely by a critical theoretical perspective, employs a qualitative case study strategy to explore and analyze the presence of dominant Western ideological discourses that may have contributed to producing particular stance of the university's leadership on the relevance of Middle East studies in the aftermath of 9/11. More specifically, a critique is developed from the perceptions and insights of the senior administration and faculty based on their views of the pertinence of Middle East studies, and whether they think the university's response has been rather deficient. The evidence drawn from this enquiry highlights that the thinking and practice that had arisen and prevailed during the Cold War still persists, ostensibly in the dominant academic discourses.
Many prescribed treatments for children have not been adequately tested in children, sometimes resulting in harmful treatments being given and beneficial treatments being withheld. In the absence of specific trial-based data in children, results of studies in adults are extrapolated, which is often inappropriate because children have different range of diseases and metabolize medications differently. Trials in children are more challenging than those in adults and the pool of eligible children entering trials is often small. Children must have at last the same rights as adults in relation to receiving treatment with medicinal products that have been fully tested. The need for more studies to obtain paediatric information for medicines used in children is now a matter of consensus on a global basis and is considered a public health priority. Therfore a survey was performed in university hospitals in Germany targeting the current and future situation of children in clinical trials. The questionnaire of this survey was sent to 68 paediatric departments in 31 university clinics in Germany with a respond rate of 27% with respect to 18 returned questionnaires. With regard to new laws, guidelines and strong governmental support and funding an increasing number of clinical trials is expected. Surprisingly, the number of trials in the paediatric population remains unchanged within a period of 4 years (2005-2008). Added to the surveys performed within the pharmaceutical industry from Heinrich and Hark the number of trials in children remains unchanged even within a period of 9 years (2000-2008). The efforts undertaken by the government regarding funding and supporting KKS (Coordinating Centers for Clinical Trials) and affiliated PAED-Net (Pediatric Network on Medication Development and Testing in Children and Adolescents at KKS) appear to be insufficient. Beginning of this year the legal framework with the urgent expected "Paediatric Regulation" was established. May be the implementation by clinicians and pharmaceutical ...
AbstractApplications of advanced oxidation processes (AOPs) in water and wastewater treatment have been the subject of growing interest throughout the last decade. Although UV/hydrogen peroxide (UV‐H2O2) is the most established technology among the UV‐AOPs, UV‐chlorine (UV‐Cl) is emerging as a reliable and potentially more cost‐effective alternative. Recent studies have indicated that UV‐Cl processes may be more efficient and economically favourable for the degradation of some chemicals of emerging concern from contaminated water. Moreover, in terms of the formation of disinfection by‐products (DBPs), UV‐H2O2 seems to have no superiority over UV‐Cl. This said, more investigation in the assessment of genotoxicity and cytotoxicity of DBPs is required. Additionally, more pilot‐scale and full‐scale studies are required to establish UV‐Cl as a reliable alternative to UV‐ H2O2. This paper compares UV‐Cl and UV‐H2O2 AOPs for the degradation of intractable chemicals from water and wastewater based on the practical considerations of efficiency, cost, DBP formation, kinetics and sensitivity to water matrix variability. Finally, various modelling approaches to UV‐Cl have been reviewed. This review showed that UV‐Cl is superior to UV‐H2O2 in terms of degradation efficiency and cost effectiveness and can be a robust alternative in many UV‐AOPs applications.
Objective: Little is known about the relationship between adiposity and telomere length in the United States population. The objective of our research was to examine this relationship in a representative, socioeconomically and sex-specific, diverse racial/ethnic population in the United States.Design: Cross-sectional.Methods: Body mass index (BMI), % total body fat (TBF) and waist circumference (WC) with leukocyte telomere length (LTL) were examined according to sex-specific race/ethnicity using separate adjusted multivariate linear regressions on a sample of 4,919 respondents aged 20-84 years from the National Health and Nutrition Examination Survey's 1999-2002 data.Results: LTL was shortened .41%, .44%, and .16% in African American (AA) women and was associated with increasing BMI, %TBF, and WC, (β:-.0041, 95%CI: -.0070, -.0012; P=.007; β:-.0044, 95% CI: -.0081, -.0007; P=.02; β:-.0016, 95%CI: -.0031, -.0001; P=.04, respectively). LTL was shortened .29% in White women and was associated with increasing %TBF (β:-.0029, 95%CI: -.0048, -.0009; P=.006). There were no associations among AA men, White men or Mexican American men and women.Conclusions: LTL is associated with an obesity phenotype in AA women. Tailored intervention is needed to ameliorate the burden of excess adiposity and subsequent cellular aging. Ethn Dis. 2020;30(3):441-450; doi:10.18865/ed.30.3.441
