Miracle-dz/UniFAR-FTUs huggingface dataset:
Development of the parental needs scale for rare diseases: a tool for measuring the supportive care needs of parents caring for a child with a rare disease

Background Children and families affected by rare diseases have received scant consideration from the medical, scientific, and political communities, with parents’ needs especially having received little attention. Affected parents often have limited access to information and support and appropriate health care services. While scales to measure the needs of parents of children with chronic illnesses have been developed, there have been no previous attempts to develop a scale to assess the needs of parents of children with rare diseases. Objective To develop a scale for measuring the supportive care needs of parents of children with rare diseases. Method A total of 301 responses to our Parental Needs Survey were randomly divided into two halves, one for exploratory factor analysis and the other for confirmatory factor analysis (CFA). After removing unsuitable items, exploratory factor analysis was undertaken to determine the factor structure of the data. CFA using structural equation modeling was then undertaken to confirm the factor structure. Results Seventy-two items were entered into the CFA, with a scree plot showing a likely four-factor solution. The results provided four independent subscales of parental needs: Understanding the disease (four items); Working with health professionals (four items); Emotional issues (three items); and Financial needs (three items). The structural equation modeling confirmed the suitability of the four-factor solution and demonstrated that the four subscales could be added to provide an overall scale of parental need. Conclusion This is the first scale developed to measure the supportive care needs of parents of children with rare diseases. The scale is suitable for use in surveys to develop policy, in individual clinical assessments, and, potentially, for evaluating new programs. Measuring the supportive care needs of parents caring for a child with a rare disease will hopefully lead to better physical and psychological health outcomes for parents and their affected children.
Notched Strength and Fracture Criterion in Fabric Composite Plates Containing a Circular Hole

The effects of the hole size and the specimen width on the fracture behavior of several woven fabric composite plates are experimentally investigated in tension. It is shown in this paper that the characteristic length (d o ) in the Point Stress Criterion (PSC) depends on the hole size and the specimen width. A modified PSC for predicting the notched strength is proposed. An excellent agreement is found between the experimental results and the analytical predictions using the modified PSC. When the unstable fracture occurred, the equivalent critical crack length (a c ) corresponding to the damage zone size is about twice the characteristic length. The characteristic length decreases with an increase in the notched strength. The critical energy release rate (G c ) corresponding to the unstable fracture criterion is independent of the hole size for the same specimen width. G c increases with an increase in the specimen width. These results can be explained by the correlation between the G c and the notch sensitivity factor (k).
Designing to see and share structure in number sequences

This paper reports on a design experiment in the domain of number sequences conducted in the course of the WebLabs project. We iteratively designed and tested a set of activities and tools in which 10-14 year old students used the ToonTalk programming environment to construct models of sequences and series, and then shared their models and their observations about them utilising a webbased collaboration system. We report on the evolution of a design pattern (programming method) called ‘Streams’ which enables students to engage in the process of summing and ‘hold the series in their hand’, and consequently make sophisticated arguments regarding the mathematical structures of the sequences without requiring the use of algebra. While the focus of this paper is mainly on the design of activities, and in particular their epistemological foundations, some illustrative examples of one group of students’ work indicate the potential of the activities and tools for expressing and reflecting on deep mathematical ideas.
Activation of HIV Transcription with Short-Course Vorinostat in HIV-Infected Patients on Suppressive Antiretroviral Therapy

Human immunodeficiency virus (HIV) persistence in latently infected resting memory CD4+ T-cells is the major barrier to HIV cure. Cellular histone deacetylases (HDACs) are important in maintaining HIV latency and histone deacetylase inhibitors (HDACi) may reverse latency by activating HIV transcription from latently infected CD4+ T-cells. We performed a single arm, open label, proof-of-concept study in which vorinostat, a pan-HDACi, was administered 400 mg orally once daily for 14 days to 20 HIV-infected individuals on suppressive antiretroviral therapy (ART). The primary endpoint was change in cell associated unspliced (CA-US) HIV RNA in total CD4+ T-cells from blood at day 14. The study is registered at ClinicalTrials.gov (NCT01365065). Vorinostat was safe and well tolerated and there were no dose modifications or study drug discontinuations. CA-US HIV RNA in blood increased significantly in 18/20 patients (90%) with a median fold change from baseline to peak value of 7.4 (IQR 3.4, 9.1). CA-US RNA was significantly elevated 8 hours post drug and remained elevated 70 days after last dose. Significant early changes in expression of genes associated with chromatin remodeling and activation of HIV transcription correlated with the magnitude of increased CA-US HIV RNA. There were no statistically significant changes in plasma HIV RNA, concentration of HIV DNA, integrated DNA, inducible virus in CD4+ T-cells or markers of T-cell activation. Vorinostat induced a significant and sustained increase in HIV transcription from latency in the majority of HIV-infected patients. However, additional interventions will be needed to efficiently induce virus production and ultimately eliminate latently infected cells. Trial Registration ClinicalTrials.gov NCT01365065
Awareness and Use of Over-the-Counter Pain Medications: A Survey of Emergency Department Patients

Background. A survey study was done to determine basic knowledge about and use of over-the-counter (OTC) pain medications among patients seen in our emergency department (ED). The hypothesis was that knowledge about OTC pain medications would be correlated with demographic characteristics. Methods. The study was a prospective 21-question survey during randomized 4-hour shifts over a 6-week study period. Results. Of the 213 subjects who participated, 143 (67%) reported having used some form of nonsteroidal anti-inflammatory drug (NSAID), and 127 (60%) had used acetaminophen products recently. Women were more aware of toxic interactions and gastrointestinal (GI) irritation related to these medications. Ibuprofen use correlated with age (younger individuals used more) and having no primary physician (those without a physician used less). Knowledge about GI effects correlated with age, sex, and education. Knowledge about renal and hepatic problems correlated with age and education. Conclusion. Many patients use OTC pain medications. Many are ill informed about their use and side effects. More education is needed.
The Longitudinal Relation Between Peer Violent Victimization and Delinquency

Using a nationally representative sample of adolescents from the United States aged 12 to 17 years (Wave 1, n = 3,614; Wave 2, n = 2,511), this study examined (a) demographic and descriptive information about peer violent victimization (PVV); and (b) the longitudinal relation between a history of PVV and delinquency. Results indicated that 12.4% of adolescents reported lifetime exposure to PVV, and many of these adolescents with a previous history of PVV also reported exposure to other forms of interpersonal violence, with witnessing community/school violence being the most commonly endorsed exposure category. Males, older adolescents, African American adolescents, and adolescents from low-income households were significantly more likely to endorse PVV. Regardless of the victim’s gender, the majority of the perpetrators were male. After controlling for exposure to other forms of interpersonal violence and a history of delinquency, PVV was related to subsequent delinquency. Implications for policy, practice, and future research are discussed.
Foreign Body Emboli following Cerebrovascular Interventions: Clinical, Radiographic, and Histopathologic Features

SUMMARY: Foreign material emboli following cerebral, cardiac, and peripheral catheterizations have been reported since the mid-1990s. Catheter coatings have been frequently implicated. The most recent surge of interest in this phenomenon within the neurointerventional community is associated with procedures using flow-diversion devices for the treatment of cerebral aneurysms. Following coil-supported Pipeline embolization in 4 cases and stent-supported coiling in 1, 5 patients developed multiple subcentimeter enhancing lesions, usually with surrounding edema and variable magnetic susceptibility in the vascular territories of the treated aneurysms. Conventional angiography findings were unrevealing. Laboratory work-up showed mild CSF protein elevation with no leukocytosis. Brain biopsy in 2 cases revealed granulomatous angiitis encasing foreign material, identical in stain appearance to a polyvinylpyrrolidone catheter coating. Corticosteroid administration typically produced clinical improvement. A heterogeneous radiographic and clinical course was noted, with rise and fall in the number of enhancing lesions in 2 patients and persistence in others. The etiology may be related to widespread adoption of increasingly sophisticated catheterization techniques.
Perceptions of interactive whiteboard pedagogy in the teaching of Chinese language

There have been many positive claims made concerning the benefits of learning through a pedagogy which makes use of an interactive whiteboard (IWB), leading to a rapid acquisition and implementation of the IWB in schools. There is more limited research, however, of the effectiveness of the IWB in language learning and, in particular, in the learning of Chinese. This case study research used both qualitative and quantitative data to collect teacher and student perceptions of the learning of Chinese through an IWB pedagogy in one secondary school in Sydney, Australia, involving students in three levels of senior secondary school. Our findings confirm previous studies which state that students endorse the use of new technology in education. In particular, our study shows that the students believed that the IWB was effective in enhancing various aspects of their Chinese language learning. The positive attitude of the teacher towards the use of new technology in teaching is also found to play an important role in the implementation and success of the use of the IWB and in turn leads to the effective teaching and learning of Chinese. This study contributes to attention within research to the application of new technology in language learning.
Online Segmentation of Time Series Based on Polynomial Least-Squares Approximations

The paper presents SwiftSeg, a novel technique for online time series segmentation and piecewise polynomial representation. The segmentation approach is based on a least-squares approximation of time series in sliding and/or growing time windows utilizing a basis of orthogonal polynomials. This allows the definition of fast update steps for the approximating polynomial, where the computational effort depends only on the degree of the approximating polynomial and not on the length of the time window. The coefficients of the orthogonal expansion of the approximating polynomial-obtained by means of the update steps-can be interpreted as optimal (in the least-squares sense) estimators for average, slope, curvature, change of curvature, etc., of the signal in the time window considered. These coefficients, as well as the approximation error, may be used in a very intuitive way to define segmentation criteria. The properties of SwiftSeg are evaluated by means of some artificial and real benchmark time series. It is compared to three different offline and online techniques to assess its accuracy and runtime. It is shown that SwiftSeg-which is suitable for many data streaming applications-offers high accuracy at very low computational costs.
A Translation of Pseudo Boolean Constraints to SAT

This paper introduces a new CNF encoding of pseudo-Boolean constraints, which allows unit propagation to maintain generalized arc consistency. In the worst case, the size of the produced formula can be exponentially related to the size of the input constraint, but some important classes of pseudo-Boolean constraints, including Boolean cardinality constraints, are encoded in polynomial time and size. The proposed encoding was integrated in a solver based on the zCha SAT solver and submitted to the PB05 evaluation. The results provide new perspectives in the eld of full CNF approach of pseudo-Boolean constraints solving.
Efficacy of piroxicam for postoperative pain after lower third molar surgery associated with CYP2C8*3 and CYP2C9

Objective Nonsteroidal anti-inflammatory drugs (NSAIDs) are metabolized by the cytochrome P450 enzymes (CYPs), predominantly CYP2C8 and CYP2C9. The aim of this study was to evaluate the possible association of polymorphisms in the CYP2C8*3 and CYP2C9 genes with the clinical efficacy of oral piroxicam (20 mg daily for 4 days) after lower third molar surgeries with regard to postoperative pain, swelling, trismus, adverse reactions, need for rescue medication and the volunteer’s overall satisfaction. Materials and methods For this purpose, 102 volunteers were genotyped for CYP2C8*3 and CYP2C9 polymorphisms. Briefly, genomic DNA was isolated from saliva collected from volunteers subjected to invasive lower third molar surgeries, and the preoperative, intraoperative and postoperative parameters were collected and analyzed. Results An equal amount of piroxicam sufficiently managed postoperative pain and inflammatory symptoms, with visual analog pain scores typically <40 mm for all genotypes investigated. Furthermore, only two out of 102 volunteers heterozygous for CYP2C8*3 and CYP2C9*3 reported adverse side effects. Conclusion In general, slow metabolizers of piroxicam, who were volunteers with mutant alleles, were indifferent from normal metabolizers with the wild-type alleles and therefore did not require specialized piroxicam doses to manage postoperative pain and inflammation.
Lysosomal Dysfunction Caused by Cellular Accumulation of Silica Nanoparticles*

Nanoparticles (NPs) are widely used as components of drugs or cosmetics and hold great promise for biomedicine, yet their effects on cell physiology remain poorly understood. Here we demonstrate that clathrin-independent dynamin 2-mediated caveolar uptake of surface-functionalized silica nanoparticles (SiNPs) impairs cell viability due to lysosomal dysfunction. We show that internalized SiNPs accumulate in lysosomes resulting in inhibition of autophagy-mediated protein turnover and impaired degradation of internalized epidermal growth factor, whereas endosomal recycling proceeds unperturbed. This phenotype is caused by perturbed delivery of cargo via autophagosomes and late endosomes to SiNP-filled cathepsin B/L-containing lysosomes rather than elevated lysosomal pH or altered mTOR activity. Given the importance of autophagy and lysosomal protein degradation for cellular proteostasis and clearance of aggregated proteins, these results raise the question of beneficial use of NPs in biomedicine and beyond.
Structure, Organization, and Delivery of Critical Care in Asian ICUs*

Objectives:Despite being the epicenter of recent pandemics, little is known about critical care in Asia. Our objective was to describe the structure, organization, and delivery in Asian ICUs. Design:A web-based survey with the following domains: hospital organizational characteristics, ICU organizational characteristics, staffing, procedures and therapies available in the ICU and written protocols and policies. Setting:ICUs from 20 Asian countries from April 2013 to January 2014. Countries were divided into low-, middle-, and high-income based on the 2011 World Bank Classification. Subjects:ICU directors or representatives. Measurements and Main Results:Of 672 representatives, 335 (50%) responded. The average number of hospital beds was 973 (SE of the mean [SEM], 271) with 9% (SEM, 3%) being ICU beds. In the index ICUs, the average number of beds was 21 (SEM, 3), of single rooms 8 (SEM, 2), of negative-pressure rooms 3 (SEM, 1), and of board-certified intensivists 7 (SEM, 3). Most ICUs (65%) functioned as closed units. The nurse-to-patient ratio was 1:1 or 1:2 in most ICUs (84%). On multivariable analysis, single rooms were less likely in low-income countries (p = 0.01) and nonreferral hospitals (p = 0.01); negative-pressure rooms were less likely in private hospitals (p = 0.03) and low-income countries (p = 0.005); 1:1 nurse-to-patient ratio was lower in private hospitals (p = 0.005); board-certified intensivists were less common in low-income countries (p < 0.0001) and closed ICUs were less likely in private (p = 0.02) and smaller hospitals (p < 0.001). Conclusions:This survey highlights considerable variation in critical care structure, organization, and delivery in Asia, which was related to hospital funding source and size, and country income. The lack of single and negative-pressure rooms in many Asian ICUs should be addressed before any future pandemic of severe respiratory illness.
DNAWorks: an automated method for designing oligonucleotides for PCR-based gene synthesis.

The availability of sequences of entire genomes has dramatically increased the number of protein targets, many of which will need to be overexpressed in cells other than the original source of DNA. Gene synthesis often provides a fast and economically efficient approach. The synthetic gene can be optimized for expression and constructed for easy mutational manipulation without regard to the parent genome. Yet design and construction of synthetic genes, especially those coding for large proteins, can be a slow, difficult and confusing process. We have written a computer program that automates the design of oligonucleotides for gene synthesis. Our program requires simple input information, i.e. amino acid sequence of the target protein and melting temperature (needed for the gene assembly) of synthetic oligonucleotides. The program outputs a series of oligonucleotide sequences with codons optimized for expression in an organism of choice. Those oligonucleotides are characterized by highly homogeneous melting temperatures and a minimized tendency for hairpin formation. With the help of this program and a two-step PCR method, we have successfully constructed numerous synthetic genes, ranging from 139 to 1042 bp. The approach presented here simplifies the production of proteins from a wide variety of organisms for genomics-based studies.
Autoantibodies predicting the outcome of rheumatoid arthritis: evaluation in two subsets of patients according to severity of radiographic damage

OBJECTIVE Autoantibodies such as rheumatoid factor (RF), antikeratin antibodies (AKA), antiperinuclear factor (APF), and anti-RA 33 antibodies are considered of value for the diagnosis of RA. The purpose of this study was to evaluate these autoantibodies as predictors of severe radiographic damage in rheumatoid arthritis (RA). PATIENTS AND METHODS Eighty six patients with RA (70 women, 16 men) fulfilling 1987 ACR criteria were selected from a cohort of 469 patients followed up since the first year of RA onset because they could be divided in two groups according to the severity of the radiographic damage. These 86 patients had a mean (SD) disease duration of eight (four) years: 43 patients had severe radiographic damage (Larsen score ⩾2) and 43 had limited radiographic damage (Larsen score < 2). The two groups were matched by disease duration and sex. The following autoantibodies were looked for: RF, ANA, AKA, APF, and anti-RA 33 antibodies. In addition, HLA class II DR β alleles and standard inflammatory parameters (erythrocyte sedimentation rate, C reactive protein) were determined. RESULTS Patients with severe radiographic damage differed from those with limited radiographic damage in that they had higher RF (p=0.01), APF (p<0.02), and AKA (p=0.001) titres. Stepwise regression analysis was done to calculate the odds ratios (OR) for each clinical and laboratory variable; only presence of cutaneous nodules (OR: 14.9; 95% CI: 7, 128), HLA DRB1*04 or DRB1*01 (OR: 7.53; 95% CI: 1.32, 42.9), AKA (OR: 3.11; 95%, CI: 0.58, 16.8 ), a high erthrocyte sedimentation rate (OR: 2.66; 95% CI: 0.60, 11.9), and a high C reactive protein value (OR: 7.4; 95% CI : 1.43, 38.1) were predictive of severe radiographic damage. CONCLUSION These data suggest that the risk of severe radiographic damage in RA patients is higher when cutaneous nodules, HLA DRB1*04 or DRB1*01, and/or AKA are present. The other autoantibodies of diagnostic significance are of little help for predicting joint destruction.
CYCLIC DEFORMATION AND FATIGUE BEHAVIORS OF STAINLESS STEEL 304L INCLUDING MEAN STRESS AND PRE-STRAINING EFFECTS

This paper discusses cyclic deformation and fatigue behavior of three grades of stainless steel 304L. Effects of pre-straining and mean stress were investigated and it was observed that these parameters influence both deformation and fatigue behaviors. At HCF, significant secondary hardening was observed for two of the materials, leading to a significant change in fatigue behavior at long lives. For two of the materials, pre-strained tests were also conducted. Hardening was observed as a consequence of pre-straining and affected further deformation and fatigue behaviors significantly. Mean stress effects on fatigue lives were as expected, as compressive mean stress lengthened life and tensile mean stress shortened life. The Smith-Watson-Topper (SWT) parameter was used to correlate the experimental data from all test conditions for the three materials and was found to correlate the experimental data reasonably well.Copyright © 2008 by ASME
Micromachined flow cytometers with embedded etched optic fibers for optical detection

This paper presents a device that integrates a micromachined flow cytometer with two embedded etched optic fibers in order to carry out on-line detection of particles and cells. A simple and reliable fabrication process is used to fabricate the cytometer on soda-lime glass substrates. It is shown experimentally that particles/cells can be squeezed hydrodynamically into a narrow stream by two neighboring sheath flows such that they flow individually through a detection region. The resulting scattered light is then detected by etched optic fibers downstream. The proposed approach has the advantage that particles/cells can be counted without the need for fluorescent labeling or delicate optical alignment procedures. The current study confirms the success of the proposed microchip in the counting of polystyrene beads and human blood cells. The results also indicate that the intensity of the scattered light is proportional to the size of the particles/cells, which suggests that the proposed device may offer the potential to distinguish between particles/cells of different sizes.