bluuebunny/crossref_metadata_2025_split huggingface dataset:
How the Practicing Physician Encounters Human Rights in Daily Clinical Situations
Authors: Rosiek A. , Leksowski K. 
Published: May 2013

Our study shows the awareness and application of the concept of human rights (understood as patient rights) in a hospital environment. We sought to determine whether such rights are respected, soliciting the opinion of patients and as to how it acts as a measure for whether service delivery is wholly effective in the conext of the clinician-patient relation. Our research was undertaken to signal a contemporary need in service delivery: health personnel involved in the delivery of surgical services have much to learn from the practical applications of human rights principles and the essential role they must fulfill in research and advocacy in order to improve the availability of surgical care globally. Human rights, medical ethics and empathy are parallel mechanisms working at the level of the patient-clinician relationship. This, in general, can influence the quality of care and communication for the better. Our study was conducted in 2011 and lasted 6 months. The research sites were the public hospitals located in the Kujavian-Pomeranian region of Poland. There were two classes of hospitals: the first, had more than 400 beds (Group I) and the second one: above 400 beds (Group II). We solicted the opinion of 180 patients who had undergone laparoscopic cholecystectomy. The main planned outcome (hypothesis zero) of the study was that there were no differences between the two Groups of hospitals, and therefore no substantial variance in service delivery. The Mann-Whitney U test evidenced that judging by the significance level (p > 0.05), there is no basis for rejecting hypothesis zero.
Who Defines Culturally Acceptable Health Access? Universal rights, healthcare politics and the problems of two Mbya-Guarani communities in the Misiones Province, Argentina
Authors: Sy A. 
Published: May 2013

This paper seeks to analyze the problems and barriers encountered when public policy health programs are implemented within indigenous communities. The initial stumbling block for such programs is precisely the idea of health as a universal right, around which emerges a characterization and stereotype of the indigenous population who are consequently addressed as a homogenized unit subsisting below the poverty line, and marginalized. A result of this is that the particular ethno-cultural register of such populations fails to be acknowledged and form part of a systematic public health policy. Consequently, health policies become generalized in character, unable to variate and differentiate according to the culturally specific contexts within which health outreach and access is needed. In this sense, based on the results of an ethnographic study carried out in two Mbya-Guaraní indigenous communities of Argentina, our study highlights as to how public policies of indigenous health are perceived, their impact value measured, and the meanings which emerge locally about the policy practices implemented.Lastly, our study identifies problems that can be avoided in fulfilling the goals of universal policies and certain questions to consider at the time of policy design and implementation.
Open science grid: Building and sustaining general cyberinfrastructure using a collaborative approach
Authors: Avery Paul 
Published: May 2013

I describe in this paper the creation and operation of the Open Science Grid (OSG [1]), a distributed shared cyberinfrastructure driven by the milestones of a diverse group of research communities. The effort is fundamentally collaborative, with domain scientists, computer scientists and technology specialists and providers from more than 70 U.S. universities, national laboratories and organizations providing resources, tools and expertise. The evolving OSG facility provides computing and storage resources for particle and nuclear physics, gravitational wave experiments, digital astronomy, molecular genomics, nanoscience and applied mathematics. The OSG consortium also partners with campus and regional grids, large projects such as TeraGrid [2], Earth System Grid [3], Enabling Grids for E–sciencE (EGEE [4]) in Europe and related efforts in South America and Asia to facilitate interoperability across national and international boundaries.
OSG’s experience broadly illustrates the breadth and scale of effort that a diverse, evolving collaboration must undertake in building and sustaining large–scale cyberinfrastructure serving multiple communities. Scalability — in resource size, number of member organizations and application diversity — remains a central concern. As a result, many interesting [5] challenges continue to emerge and their resolution requires engaged partners and creative adjustments.
Influenza: Propagation, Quantification, and Storage
Authors: Balish Amanda L. , Katz Jacqueline M. , Klimov Alexander I. 
Published: May 2013

AbstractInfluenza viruses are negative‐sense, single‐stranded, enveloped RNA viruses belonging to the family Orthomyxoviridae. Three types exist, influenza A, B, and C. All infect humans, but only A and B are major human pathogens. Influenza type A viruses are divided into subtypes based on genetic and antigenic differences in the two surface spike proteins, hemagglutinin (HA) and neuraminidase (NA). The appropriate cell lines to be used for isolation of influenza A or B viruses depend on the clinical information and the host of origin. MDCK cells are the preferred cell line for isolation of human influenza viruses from clinical specimens. Curr. Protoc. Microbiol. 29:15G.1.1‐15G.1.24. © 2013 by John Wiley & Sons, Inc.
Utility of the PedsQL Rheumatology Module as an Outcome Measure in Juvenile Fibromyalgia
Authors: Joffe Naomi E. , Lynch‐Jordan Anne , Ting Tracy V. , Arnold Lesley M. , Hashkes Philip J. , Lovell Daniel J. , Passo Murray H. , Powers Scott W. , Schikler Kenneth N. , Kashikar‐Zuck Susmita 
Published: May 2013

ObjectiveThe PedsQL rheumatology module is currently the only available measure of disease‐specific quality of life for children and adolescents with juvenile fibromyalgia (FM), but limited information has been published about the psychometric properties of the instrument, specifically in juvenile FM. The objective of this study was to assess the reliability, validity, and sensitivity to change of the 5 scales (pain and hurt, daily activities, treatment, worry, and communication) of the patient and parent proxy versions of the PedsQL rheumatology module in the context of a randomized controlled trial in juvenile FM.MethodsThe entire PedsQL rheumatology module was administered as a supplementary outcome measure at baseline, posttreatment, and 6‐month followup assessments of 114 children and adolescents with juvenile FM enrolled in a trial testing the efficacy of cognitive–behavioral therapy.ResultsInternal consistency reliabilities for the scales were adequate to strong (Cronbach's α = 0.68–0.86). Parent proxy and child reports on most scales (except for daily activities and communication) showed moderate correlations (Spearman's r = 0.33–0.45). Support for construct validity was found by comparing child and parent reports with other related measures of pain and functioning (visual analog scale pain ratings and the Functional Disability Inventory). Finally, sensitivity to change was demonstrated by significant changes in 4 of the 5 scales (excluding the daily activities scale) after treatment.ConclusionThe PedsQL rheumatology module generally appears to have good utility for use in juvenile FM patients, but there are some caveats to the interpretation of specific scales in this population.
Readability and Suitability Assessment of Patient Education Materials in Rheumatic Diseases
Authors: Rhee Rennie L. , Von Feldt Joan M. , Schumacher H. Ralph , Merkel Peter A. 
Published: May 2013

ObjectiveWeb‐based patient education materials and printed pamphlets are frequently used by providers to inform patients about their rheumatic disease. Little attention has been given to the readability and appropriateness of patient materials. The objective of this study was to examine the readability and suitability of commonly used patient education materials for osteoarthritis (OA), rheumatoid arthritis, systemic lupus erythematosus, and vasculitis.MethodsFive or 6 popular patient resources for each disease were chosen for evaluation. Readability was measured using the Flesch‐Kincaid reading grade level and suitability was determined by the Suitability Assessment of Materials (SAM), a score that considers characteristics such as content, graphics, layout/topography, and cultural appropriateness. Three different reviewers rated the SAM score and means were used in the analysis.ResultsTwenty‐three resources written on the 4 diseases were evaluated. The education material for all 4 diseases studied had readability above the eighth‐grade level and readability did not differ among the diseases. Only 5 of the 23 resources received superior suitability scores, and 3 of these 5 resources were written for OA. All 4 diseases received adequate suitability scores, with OA having the highest mean suitability score.ConclusionMost patient education materials for rheumatic diseases are written at readability levels above the recommended sixth‐grade reading level and have only adequate suitability. Developing more appropriate educational resources for patients with rheumatic diseases may improve patient comprehension.
Visible‐Light Photocatalytic Reduction of Sulfonium Salts as a Source of Aryl Radicals
Authors: Donck Simon , Baroudi Abdulkader , Fensterbank Louis , Goddard Jean‐Philippe , Ollivier Cyril 
Published: May 2013

AbstractTriarylsulfonium salts are prompted to undergo efficient homolytic reduction by single electron transfer under mild photocatalytic conditions. The liberated aryl radical can then participate in carbon‐carbon bond formation processes with allyl sulfones and activated olefins. Triarylsulfonium salts emerge as a valuable and alternative source of aryl radicals for synthesis.
Synthesis of N‐Arylamides by Copper‐Catalyzed Amination of Aryl Halides with Nitriles
Authors: Xiang Shi‐Kai , Zhang Dong‐Xue , Hu Hao , Shi Jiang‐Ling , Liao Li‐Guo , Feng Chun , Wang Bi‐Qin , Zhao Ke‐Qing , Hu Ping , Yang Hua , Yu Wen‐Hao 
Published: May 2013

AbstractA copper‐catalyzed amination of aryl halides with nitriles has been developed. The use of nitriles as nitrogen nucleophiles can make the synthesis of N‐arylamides more simple than that using amides through in‐situ hydrolysis. A variety of N‐arylamides and benzoxazole derivatives can be synthesized according to this approach.
The Copper‐Catalyzed Oxidative N‐Acylation of Sulfoximines
Authors: Wang Long , Priebbenow Daniel L. , Zou Liang‐Hua , Bolm Carsten 
Published: May 2013

AbstractAn oxidative cross‐coupling reaction between aldehydes and sulfoximines involving dual CH/NH functionalization has been developed. This reaction process is facilitated by a simple copper catalyst (1 mol% loading) and tert‐butyl hydroperoxide (TBHP) as the oxidant and proceeds under mild reaction conditions to afford a series of valuable N‐acylated sulfoximine derivatives in excellent yields.
Building Functionality through Sequential CB and CF Bond Formation
Authors: Palau‐Lluch Gerard , Fernández Elena 
Published: May 2013

Abstractα′‐Fluoro β‐boryl ketones can be efficiently synthesised from a sequential organocatalytic β‐boration pathway and consecutive electrophilic fluorination reaction in an acidic medium. Alternatively, the regioisomers of α‐fluoro β‐boryl ketones can be diastereoselectively obtained from Cu(I)‐mediated β‐boration followed by in situ fluorination of the boron enolate. Enantioenriched mixtures of the major anti‐diastereomer of vicinal CB and CF bonds are found in the presence of the chiral ligand QuinoxP*.
Nitrones as Trapping Reagents of α,β‐Unsaturated Carbene Intermediates – [1,2]Oxazino[5,4‐b]indoles by a Platinum‐ Catalyzed Intermolecular [3+3] Cycloaddition
Authors: Yang Weibo , Wang Tao , Yu Yang , Shi Shuai , Zhang Tuo , Hashmi A. Stephen K. 
Published: May 2013

AbstractSome readily available Boc‐protected 2‐(3‐methoxy‐1‐propynyl)anilines and nitrones in platinum‐catalyzed reactions deliver [1,2]oxazino[5,4‐b]indoles. Twelve examples with yields of 41–95% are reported. Different substituents like nitro, trifluoromethyl, fluoro, bromo, and ester groups are tolerated. With regard to the mechanism, this reaction probably combines an initial intramolecular cyclization/elimination to vinylcarbenoid species and a subsequent stepwise intermolecular [3+3] cycloaddition with the nitrones.
Mortality of congenital osteochondrodysplasias: A nationwide registry‐based study
Authors: Morales‐Piga Antonio , Alonso‐Ferreira Verónica , Villaverde‐Hueso Ana , Posada de la Paz Manuel , López‐Abente Gonzalo 
Published: May 2013

AbstractOsteochondrodysplasias are a heterogeneous group of more than 200 entities, characterized by abnormalities of cartilage, bone growth, and skeletal development. The aim of this study was to assess temporal and spatial changes in overall mortality due to these disorders in Spain, using data from a nationwide registry. Annual deaths showing osteochondrodysplasias as the underlying cause of death were selected using the International Classification of Diseases‐9th revision (ICD‐9) codes for the period 1981 through 1998, and ICD‐10 codes for the period 1999 through 2008. Age‐adjusted mortality rates were calculated by sex, and geographic analysis was performed by municipality. A total of 679 deaths were recorded (53% men). Age‐adjusted mortality rates went from 0.09 (0.06, 0.12) per 100,000 population in 1981 to 0.05 (0.03, 0.08) per 100,000 population in 2008. A changing trend in the age‐standardized mortality rate was in evidence, with an annual increase of 2.4% (−0.4, 5.2) from 1981 to 1994, and an annual decrease of −7.3% (−10.9, −3.5) from 1995 onwards. Geographic analysis showed some places situated in the west and south of Spain with greater risk of mortality. There is a need to identify risk factors and to increase overall knowledge about the life expectancy and epidemiology of osteochondrodysplasias. (c) 2013 Wiley Periodicals, Inc.
6p21.3 microdeletion involving the SYNGAP1 gene in a patient with intellectual disability, seizures, and severe speech impairment
Authors: Writzl Karin , Knegt Alida C. 
Published: May 2013

AbstractThe chromosome 6p21.3 microdeletion phenotype was recently identified through array comparative genomic hybridization. The main features are developmental delay with severe speech impairment, seizures, and behavioral abnormalities. Three patients have been reported with deletion sizes ranging from 100 to 800 kb. We report on a 9‐year‐old boy with an apparently de novo, 50 kb deletion, and global developmental delay, severe speech impairment, and generalized epilepsy well‐controlled by medication. There were four genes identified in this deletion, of which SYNGAP1 is considered to be responsible for speech impairment and epilepsy. We compared the clinical features of this patient with previously reported patients with 6p21.3 and patients with SYNGAP1 mutations. © 2013 Wiley Periodicals, Inc.
De novo trisomy 12p in twin girls with different levels of mosaicism
Authors: Lim Eileen C.P. , Ng Ivy S.L. , Yong Min‐Hwee , Yon Hui‐Yi , Brett Maggie S.Y. , Tan Ene‐Choo 
Published: May 2013

AbstractWe report on a pair of twins with trisomy 12p diagnosed postnatally. The girls were referred for dysmorphism and global developmental delay and have been followed from 10 months of age. They have different levels of mosaicism for both buccal cells and lymphocytes. Although their phenotypic features were similar, there were different degrees of severity which correlate with the different levels of mosaicism. © 2013 Wiley Periodicals, Inc.
Progressive extreme heterotopic calcification
Authors: Silengo Margherita , Defilippi Claudio , Belligni Elga , Biamino Elisa , Flex Elisabetta , Brusco Alfredo , Ferrero Giovanni Battista , Tartaglia Marco , Hennekam Raoul C. 
Published: May 2013

AbstractThe formation of ectopic calcifications in soft tissues can occur either sporadically or as a genetically determined condition, and is seen only infrequently. We report on a girl in whom widespread, rapidly progressive ectopic calcifications were detected shortly after birth. Calcifications became present around all joints, tendons and ligaments, but did not involve internal organs and skin, and eventually caused almost complete immobility of the child at 2 years. There were no other health problems and cognitive development was normal. We compare the manifestations in the child to the characteristics of known entities causing ectopic calcifications and conclude the child differs to each. Laboratory evaluation failed to identify autoimmune phenomena as well as calcium metabolism or other biochemical abnormalities; molecular studies did not identify occurrence of mutations in disease genes known to be involved in ectopic calcifications. We conclude the manifestations in the child represent an unreported entity of hitherto unknown etiology. © 2013 Wiley Periodicals, Inc.
Recurrence of urorectal septum malformation sequence spectrum anomalies in siblings: Time to explore the genetics
Authors: Aggarwal Shagun , Phadke Shubha R. 
Published: May 2013

AbstractUrorectal septum malformation sequence (URSM) is a pattern of malformation which encompasses abnormalities of the perineal orifices, external genitalia, genitourinary system, and anorectum. The spectrum ranges from a complete form with absence of perineal openings and persistent cloaca to milder/partial forms usually with one perineal opening and internal abnormalities of anorectum, urethra, and Müllerian structures. URSM is felt to arise due to abnormalities of the caudal mesoderm, which constitutes the urorectal septum. Here, we report two male siblings, affected with a spectrum of anomalies simulating URSM. This is the first report of recurrence of URSM in sibs. It suggests the existence of hitherto unknown genetic mechanisms for this pattern of malformation. © 2013 Wiley Periodicals, Inc.
Characterization of X‐linked hypohidrotic ectodermal dysplasia (XL‐HED) hair and sweat gland phenotypes using phototrichogram analysis and live confocal imaging
Authors: Jones Kyle B. , Goodwin Alice F. , Landan Maya , Seidel Kerstin , Tran Dong‐Kha , Hogue Jacob , Chavez Miquella , Fete Mary , Yu Wenli , Hussein Tarek , Johnson Ramsey , Huttner Kenneth , Jheon Andrew H. , Klein Ophir D. 
Published: May 2013

AbstractHypohidrotic ectodermal dysplasia (HED) is the most common type of ectodermal dysplasia (ED), which encompasses a large group of syndromes that share several phenotypic features such as missing or malformed ectodermal structures, including skin, hair, sweat glands, and teeth. X‐linked hypohidrotic ectodermal dysplasia (XL‐HED) is associated with mutations in ectodysplasin (EDA1). Hypohidrosis due to hypoplastic sweat glands and thin, sparse hair are phenotypic features that significantly affect the daily lives of XL‐HED individuals and therefore require systematic analysis. We sought to determine the quality of life of individuals with XL‐HED and to quantify sweat duct and hair phenotypes using confocal imaging, pilocarpine iontophoresis, and phototrichogram analysis. Using these highly sensitive and non‐invasive techniques, we demonstrated that 11/12 XL‐HED individuals presented with a complete absence of sweat ducts and that none produced sweat. We determined that the thin hair phenotype observed in XL‐HED was due to multiple factors, such as fewer terminal hairs with decreased thickness and slower growth rate, as well as fewer follicular units and fewer hairs per unit. The precise characterization of XL‐HED phenotypes using sensitive and non‐invasive techniques presented in our study will improve upon larger genotype–phenotype studies and the assessment of future therapies in XL‐HED. © 2013 Wiley Periodicals, Inc.
Maritime adaptations and dietary variation in prehistoric Western Alaska: Stable isotope analysis of permafrost‐preserved human hair
Authors: Britton Kate , Knecht Rick , Nehlich Olaf , Hillerdal Charlotta , Davis Richard S. , Richards Michael P. 
Published: May 2013

ABSTRACTThe reconstruction of diet and subsistence strategies is integral in understanding early human colonizations and cultural adaptations, especially in the Arctic—one of the last areas of North America to be permanently inhabited. However, evidence for early subsistence practices in Western Alaska varies, particularly with regards to the emergence, importance, and intensity of sea mammal hunting. Here, we present stable carbon and nitrogen isotope data from permafrost‐preserved human hair from two new prehistoric sites in Western Alaska, providing a direct measure of diet. The isotope evidence indicates a heavy reliance on sea mammal protein among the earlier Norton‐period group (1,750 ± 40 cal BP), confirming that the complex hunting technologies required to intensively exploit these animals were most likely already in place in this region by at least the beginning of 1st millennium AD. In contrast, analysis of the more recent Thule‐period hair samples (650 ± 40 cal BP; 570 ± 30 cal BP) reveals a more mixed diet, including terrestrial animal protein. Sequential isotope analysis of two longer human hair locks indicates seasonal differences in diet in a single Norton‐period individual but demonstrates little dietary variation in a Thule‐period individual. These analyses provide direct evidence for dietary differences among Alaska's early Eskimo groups and confirm the antiquity of specialized sea mammal hunting and procurement technologies. The results of this study have implications for our understanding of human adaptation to maritime and high‐latitude environments, and the geographical and temporal complexity in early Arctic subsistence. Am J Phys Anthropol 151:448–461, 2013.© 2013 Wiley Periodicals, Inc.
Brief communication: 5‐HTTLPR genetic diversity and mode of subsistence in Native Americans
Authors: Bisso‐Machado Rafael , Ramallo Virginia , Tarazona‐Santos Eduardo , Salzano Francisco M. , Bortolini Maria Cátira , Hünemeier Tábita 
Published: May 2013

ABSTRACTThe relationship between the “individualism‐collectivism” and the serotonin transporter functional polymorphism (5‐HTTLPR), suggested in the previous reports, was tested in Native South Amerindian populations. A total of 170 individuals from 21 populations were genotyped for the 5‐HTTLPR alleles. For comparative purposes, these populations were classified as individualistic (recent history of hunter–gathering) or collectivistic (agriculturalists). These two groups showed an almost identical S allele frequency (75 and 76%, respectively). The analysis of molecular variance showed no structural differences between them. Behavioral typologies like those suggested by JY Chiao and KD Blizinsky (Proc R Soc B 277 () 529–537) are always a simplification of complex phenomena and should be regarded with caution. In addition, classification of a whole nation in the individualist/collectivist dichotomy is controversial. The focus on modes of subsistence in preindustrial societies, as was tested here, may be a good alternative although the postulated association between the 5‐HTTLPR S allele and the collectivist societies was not confirmed. Am J Phys Anthropol 151:492–494, 2013.© 2013 Wiley Periodicals, Inc.
Frequency‐comb spectroscopy of the hydrogen 1S‐3S and 1S‐3D transitions
Authors: Peters Elisabeth , Yost Dylan C. , Matveev Arthur , Hänsch Theodor W. , Udem Thomas 
Published: May 2013

AbstractAn observation of the 1S‐3S and 1S‐3D two‐photon transitions in an atomic hydrogen beam using direct frequency‐comb spectroscopy in a Doppler‐free arrangement is reported. The measurements of these transition frequencies may be used for an improved determination of the Rydberg constant and the 1S Lamb shift and could shed light on the current discrepancy in the determination of the proton charge radius. Concurrently, a frequency comb well‐suited for high‐precision, Doppler‐free spectroscopy in the deep ultraviolet (DUV) wavelength region is demonstrated.