The information needs of people living with ankylosing spondylitis: a questionnaire survey

<p>BACKGROUND:Today, health care is patient-centred with patients more involved in medical decision making and taking an active role in managing their disease. It is important that patients are appropriately informed about their condition and that their health care needs are met. We examine the information utilisation, sources and needs of people with ankylosing spondylitis (AS).</p> <p>METHODS: Participants in an existing AS cohort study were asked to complete a postal or online questionnaire containing closed and open-ended questions, regarding their information access and needs. Participants were stratified by age and descriptive statistics were performed using STATA 11, while thematic analysis was performed on open-ended question narratives. Qualitative data was handled in Microsoft Access and explored for emerging themes and patterns of experiences.</p> <p>RESULTS: Despite 73% of respondents having internet access, only 49% used the internet to access information regarding AS. Even then, this was only infrequently. Only 50% of respondents reported accessing written information about AS, which was obtained mainly in specialist clinics. Women were more likely than men to access information (63% (women) 46% (men)) regardless of the source, while younger patients were more likely to use online sources. The main source of non-written information was the rheumatologist. Overall, the respondents felt there was sufficient information available, but there was a perception that the tone was often too negative. The majority (95%) of people would like to receive a regular newsletter about AS, containing positive practical and local information. Suggestions were also made for more information about AS to be made available to non-specialist medical professionals and the general public.</p> <p>CONCLUSIONS: There appears to be sufficient information available for people with AS in the UK and this is mostly accessed by younger AS patients. Many patients, particularly men, choose not to access AS information and concerns were raised about its negative tone. Patients still rely on written and verbal information from their specialists. Future initiatives should focus on the delivery of more positive information, targeting younger participants in particular and increasing the awareness in the general population and wider non-specialist medical community.</p&gt

Characterization of toxic impacts on living marine resources in tidal rivers of the Chesapeake Bay

In 1999, the Chesapeake Bay Program completed a survey of existing data on chemical contaminants and the potential for bioeffects in 38 tidal river systems of Chesapeake Bay. This review led to the identification of 20 areas for which there were insufficient data to adequately characterize the potential for contaminant bioeffects on the Bay’s living resources. The goal of the present study was to estimate the current status of ecological condition in five of these areas and thus help to complete the overall toxics inventory for the Bay. These five systems included the Chester River, Nanticoke River, Pocomoke River, Lower Mobjack Bay (Poquosin and Back Rivers) and the South and Rhode Rivers. This study utilized a Sediment Quality Triad (SQT) approach in combination with additional water-column contaminant analysis to allow for a “weight of evidence” assessment of environmental condition. A total of 60 stations distributed among the five systems, using a probabilistic stratified random design, were sampled during the summer of 2004 to allow for synoptic measures of sediment contamination, sediment toxicity, and benthic condition. Upon completion of all analyses, stations were assigned to one of four categories based on the three legs of the triad. Stations with high sediment quality had no hits on any of the three legs of the triad; those with moderate quality had one hit; those with marginal quality had two hits; and those with poor quality had hits for all three legs of the triad. The Pocomoke River had by far the largest proportion of the total area (97.5%) classified as having high sediment quality, while the Rhode/South system had the highest proportion (11.4%) classified as poor. None of the stations in the Chester River, Nanticoke River, and Lower Mobjack Bay systems were classified as poor. More than 65% of the area of each of the five systems was classified with high to moderate sediment quality. The Rhode/South system had 30.4% of total area classified with marginally to severely poor quality. The results of this study highlight the importance of using multiple indicators and a “weight of evidence” approach to characterize environmental quality and the potential bioeffects of toxic contaminants

Multi-wavelength observations of the star forming region in L1616

We present the results of a multi-wavelength study of the star forming region in L1616. Our observations include ROSAT All-Sky Survey (RASS) and High Resolution Imager (HRI) X-ray observations, optical wide-field imaging and near-IR imaging data and optical long-slit and multi-object spectroscopic follow-up. 22 new low-mass pre-main sequence (PMS) stars are found to be distributed mainly to the East of the L1616 cometary cloud, in about a one-square-degree field. We find that the class-III infrared sources outnumber the class-II infrared sources by a factor of about three. The X-ray properties of the PMS stars in L1616 are quite similar to those of PMS stars detected in the Orion Nebula Cluster. The comparison of the position of the L1616 PMS stars in the HR diagram with theoretical PMS evolutionary tracks yields an average age of 1–2 Myr, with a very small age spread of about 1 Myr. Unlike the fossil star forming regions in Orion, L1616 appears to be a region of on-going star formation relatively far from the Orion A and B clouds. Given the small age spread, the spatial distribution of the PMS stars relative to the head of the cloud, as well as its cometary shape and high star formation efficiency, we conclude that the star formation in L1616 was most likely induced by a single event, the impact of the winds of the massive stars of the Orion OB association or a supernova explosion being the possible triggers. The Initial Mass Function (IMF) in L1616 is roughly consistent with that of the field in the mass range 0.3 < M/M_⊙ < 2.5. Several faint objects, detected in our optical images, are good candidates for young Brown Dwarfs (BDs). We might expect the number of BDs in L1616 to be intermediate between Taurus and the Trapezium

A translational framework for public health research

&lt;p&gt;&lt;b&gt;Background&lt;/b&gt;&lt;/p&gt; &lt;p&gt;The paradigm of translational medicine that underpins frameworks such as the Cooksey report on the funding of health research does not adequately reflect the complex reality of the public health environment. We therefore outline a translational framework for public health research.&lt;/p&gt; &lt;p&gt;&lt;b&gt;Discussion&lt;/b&gt;&lt;/p&gt; &lt;p&gt;Our framework redefines the objective of translation from that of institutionalising effective interventions to that of improving population health by influencing both individual and collective determinants of health. It incorporates epidemiological perspectives with those of the social sciences, recognising that many types of research may contribute to the shaping of policy, practice and future research. It also identifies a pivotal role for evidence synthesis and the importance of non-linear and intersectoral interfaces with the public realm.&lt;/p&gt; &lt;p&gt;&lt;b&gt;Summary&lt;/b&gt;&lt;/p&gt; &lt;p&gt;We propose a research agenda to advance the field and argue that resources for 'applied' or 'translational' public health research should be deployed across the framework, not reserved for 'dissemination' or 'implementation'.&lt;/p&gt

Gas Accretion via Lyman Limit Systems

In cosmological simulations, a large fraction of the partial Lyman limit systems (pLLSs; 16<log N(HI)<17.2) and LLSs (17.2log N(HI)<19) probes large-scale flows in and out of galaxies through their circumgalactic medium (CGM). The overall low metallicity of the cold gaseous streams feeding galaxies seen in these simulations is the key to differentiating them from metal rich gas that is either outflowing or being recycled. In recent years, several groups have empirically determined an entirely new wealth of information on the pLLSs and LLSs over a wide range of redshifts. A major focus of the recent research has been to empirically determine the metallicity distribution of the gas probed by pLLSs and LLSs in sizable and representative samples at both low (z2) redshifts. Here I discuss unambiguous evidence for metal-poor gas at all z probed by the pLLSs and LLSs. At z<1, all the pLLSs and LLSs so far studied are located in the CGM of galaxies with projected distances <100-200 kpc. Regardless of the exact origin of the low-metallicity pLLSs/LLSs, there is a significant mass of cool, dense, low-metallicity gas in the CGM that may be available as fuel for continuing star formation in galaxies over cosmic time. As such, the metal-poor pLLSs and LLSs are currently among the best observational evidence of cold, metal-poor gas accretion onto galaxies.Comment: Invited review to appear in Gas Accretion onto Galaxies, Astrophysics and Space Science Library, eds. A. J. Fox & R. Dav\'e, to be published by Springe

Bioinformatics and the politics of innovation in the life sciences: Science and the state in the United Kingdom, China, and India

The governments of China, India, and the United Kingdom are unanimous in their belief that bioinformatics should supply the link between basic life sciences research and its translation into health benefits for the population and the economy. Yet at the same time, as ambitious states vying for position in the future global bioeconomy they differ considerably in the strategies adopted in pursuit of this goal. At the heart of these differences lies the interaction between epistemic change within the scientific community itself and the apparatus of the state. Drawing on desk-based research and thirty-two interviews with scientists and policy makers in the three countries, this article analyzes the politics that shape this interaction. From this analysis emerges an understanding of the variable capacities of different kinds of states and political systems to work with science in harnessing the potential of new epistemic territories in global life sciences innovation

Transcriptome-Based Differentiation of Closely-Related Miscanthus Lines

BACKGROUND: Distinguishing between individuals is critical to those conducting animal/plant breeding, food safety/quality research, diagnostic and clinical testing, and evolutionary biology studies. Classical genetic identification studies are based on marker polymorphisms, but polymorphism-based techniques are time and labor intensive and often cannot distinguish between closely related individuals. Illumina sequencing technologies provide the detailed sequence data required for rapid and efficient differentiation of related species, lines/cultivars, and individuals in a cost-effective manner. Here we describe the use of Illumina high-throughput exome sequencing, coupled with SNP mapping, as a rapid means of distinguishing between related cultivars of the lignocellulosic bioenergy crop giant miscanthus (Miscanthus × giganteus). We provide the first exome sequence database for Miscanthus species complete with Gene Ontology (GO) functional annotations. RESULTS: A SNP comparative analysis of rhizome-derived cDNA sequences was successfully utilized to distinguish three Miscanthus × giganteus cultivars from each other and from other Miscanthus species. Moreover, the resulting phylogenetic tree generated from SNP frequency data parallels the known breeding history of the plants examined. Some of the giant miscanthus plants exhibit considerable sequence divergence. CONCLUSIONS: Here we describe an analysis of Miscanthus in which high-throughput exome sequencing was utilized to differentiate between closely related genotypes despite the current lack of a reference genome sequence. We functionally annotated the exome sequences and provide resources to support Miscanthus systems biology. In addition, we demonstrate the use of the commercial high-performance cloud computing to do computational GO annotation

Gas Accretion in Star-Forming Galaxies

Cold-mode gas accretion onto galaxies is a direct prediction of LCDM simulations and provides galaxies with fuel that allows them to continue to form stars over the lifetime of the Universe. Given its dramatic influence on a galaxy's gas reservoir, gas accretion has to be largely responsible for how galaxies form and evolve. Therefore, given the importance of gas accretion, it is necessary to observe and quantify how these gas flows affect galaxy evolution. However, observational data have yet to conclusively show that gas accretion ubiquitously occurs at any epoch. Directly detecting gas accretion is a challenging endeavor and we now have obtained a significant amount of observational evidence to support it. This chapter reviews the current observational evidence of gas accretion onto star-forming galaxies.Comment: Invited review to appear in Gas Accretion onto Galaxies, Astrophysics and Space Science Library, eds. A. J. Fox & R. Dav\'e, to be published by Springer. This chapter includes 22 pages with 7 Figure