84 research outputs found

    A Qualitative Approach to Studying the Lived Experiences of High School Aged Sexual Minority and Gender Nonconforming Youth Across Relationships and Contexts.

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    Four youth who identified as sexual or gender minorities were recruited from a high school in Upstate New York for a study designed to investigate the experiences that facilitate or hinder their ability to fully question and explore their identities between and across relationships and contexts. This current investigation utilized Bronfenbrenner’s Bioecological Theory as a means with which to structure both the interviews with the informants as well as the findings. I also utilized Interpretive Phenomenological Analysis as the means of gathering, interpreting, and presenting the data in a meaningful way. The participants engaged in a range of interpersonal and context dependent strategies in an effort to manage the real, perceived, or anticipated reactions to their identities. Careful disclosure of their identities appears to have minimized rejection, as well as incidents of bullying, and was implemented with the goal of maintaining a sense of connectedness to the relationships and contexts most relevant to their development. A positive experience following the disclosure of their sexual or gender identities was associated with a sense of connectedness and a reduction in incidents of self-harm or social isolation in one or more relationships or contexts

    Validation of the post sleep questionnaire for assessing subjects with restless legs syndrome: results from two double-blind, multicenter, placebo-controlled clinical trials

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    <p>Abstract</p> <p>Background</p> <p>Because of the subjective nature of Restless Legs Syndrome (RLS) symptoms and the impact of these symptoms on sleep, patient-reported outcomes (PROs) play a prominent role as study endpoints in clinical trials investigating RLS treatments. The objective of this study was to validate a new measure, the Post Sleep Questionnaire (PSQ), to assess sleep dysfunction in subjects with moderate-to-severe RLS symptoms.</p> <p>Methods</p> <p>Pooled data were analyzed from two 12-week, randomized, placebo-controlled trials of gabapentin enacarbil (N = 540). At baseline and Week 12, subjects completed the PSQ and other validated health surveys: IRLS Rating Scale, Clinical Global Impression of Improvement (CGI-I), Profile of Mood States (POMS), Medical Outcomes Study Scale-Sleep (MOS-Sleep), and RLS-Quality of Life (RLSQoL). Pooled data were used <it>post hoc </it>to examine the convergent, divergent, known-group validity and the responsiveness of the PSQ.</p> <p>Results</p> <p>Convergent validity was demonstrated by significant correlations between baseline PSQ items and total scores of IRLS, POMS, RLSQoL, and the MOS-Sleep Scale (p ≤ 0.007 each). Divergent validity was demonstrated through the lack of significant correlations between PSQ items and demographic characteristics. Correlations (p < 0.0001) between RLS severity groups and PSQ items demonstrated known-group validity. Mean changes in investigator- and subject-rated CGI-I scores for each PSQ item (p < 0.0001) demonstrated the PSQ's responsiveness to patient change as reported by their care provider.</p> <p>Conclusions</p> <p>Although these analyses were potentially limited by the use of clinical trial data and not prospective data from a study conducted solely for validation purposes, the PSQ demonstrated robust psychometric properties and is a valid instrument for assessing sleep and sleep improvements in subjects with moderate-to-severe RLS symptoms.</p> <p>Trial Registration</p> <p>This study analyzed data from two registered trials, <a href="http://www.clinicaltrials.gov/ct2/show/NCT00298623">NCT00298623</a> and <a href="http://www.clinicaltrials.gov/ct2/show/NCT00365352">NCT00365352</a>.</p

    Early childhood lung function is a stronger predictor of adolescent lung function in cystic fibrosis than early Pseudomonas aeruginosa infection

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    Pseudomonas aeruginosa has been suggested as a major determinant of poor pulmonary outcomes in cystic fibrosis (CF), although other factors play a role. Our objective was to investigate the association of early childhood Pseudomonas infection on differences in lung function in adolescence with CF

    Advancing Distributed Data Management for the HydroShare Hydrologic Information System

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    HydroShare (https://www.hydroshare.org) is an online collaborative system to support the open sharing of hydrologic data, analytical tools, and computer models. Hydrologic data and models are often large, extending to multi-gigabyte or terabyte scale, and as a result, the scalability of centralized data management poses challenges for a system such as HydroShare. A distributed data management framework that enables distributed physical data storage and management in multiple locations thus becomes a necessity. We use the iRODS (Integrated Rule-Oriented Data System) data grid middleware as the distributed data storage and management back end in HydroShare. iRODS provides a unified virtual file system for distributed physical storages in multiple locations and enables data federation across geographically dispersed institutions around the world. In this paper, we describe the iRODS-based distributed data management approaches implemented in HydroShare to provide a practical demonstration of a production system for supporting big data in the environmental sciences

    Age of Pseudomonas aeruginosa acquisition and subsequent severity of cystic fibrosis lung disease

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    Rationale: Pseudomonas aeruginosa (Pa) is associated with poor pulmonary outcomes in cystic fibrosis (CF), but the association between age of Pa infection and severity of subsequent lung disease has not been thoroughly investigated. Objective: Our goal was to determine the association between age of Pa acquisition and subsequent severity of CF lung disease. Methods: Case–control study using CF Foundation Registry data of 629 ΔF508 homozygotes with severe and mild lung disease (FEV1 in the lowest and highest quartile of birth cohort, respectively). Multivariate logistic regression was performed to determine the association between age of Pa acquisition and lung disease severity. Results: Earlier age of Pa infection was strongly associated with increased odds of severe lung disease. For first and persistent Pa, adjusted odds ratios for severe lung disease were 6.5 (95% CI 3.1, 13.7; P < 0.0001) and 11.2 (5.4, 23.1; P < 0.0001), respectively, for subjects with infection before age 5 versus at ≥10 years; the association was stronger in females than males. Conclusions: Earlier Pa infection, particularly before 5 years of age, is strongly associated with severe CF lung disease later in life. This study is not designed to determine causality; Pa infection may be causing lung injury, or may be a marker of ongoing inflammation and lung damage in young children with CF

    Histo-Blood Group Gene Polymorphisms as Potential Genetic Modifiers of Infection and Cystic Fibrosis Lung Disease Severity

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    The pulmonary phenotype in cystic fibrosis (CF) is variable; thus, environmental and genetic factors likely contribute to clinical heterogeneity. We hypothesized that genetically determined ABO histo-blood group antigen (ABH) differences in glycosylation may lead to differences in microbial binding by airway mucus, and thus predispose to early lung infection and more severe lung disease in a subset of patients with CF. infection in the severe or mild groups. Multivariate analyses of other clinical phenotypes, including gender, asthma, and meconium ileus demonstrated no differences between groups based on ABH type. infection, nor was there any association with other clinical phenotypes in a group of 808 patients homozygous for the ΔF508 mutation
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