VIVO as an Institutional Data Registry

The Queensland University of Technology (QUT) in Brisbane, Australia, is involved in a number of projects funded by the Australian National Data Service (ANDS). Currently, QUT is working on a project (Metadata Stores Project) that uses open source VIVO software to aid in the storage and management of metadata relating to data sets created/managed by the QUT research community. The registry (called QUT Research Data Finder) will support the sharing and reuse of research datasets, within and external to QUT. QUT uses VIVO for both the display and the editing of research metadata.

Early clopidogrel versus prasugrel use among contemporary STEMI and NSTEMI patients in the US: insights from the National Cardiovascular Data Registry.

BACKGROUND: P2Y12 antagonist therapy improves outcomes in acute myocardial infarction (MI) patients. Novel agents in this class are now available in the US. We studied the introduction of prasugrel into contemporary MI practice to understand the appropriateness of its use and assess for changes in antiplatelet management practices. METHODS AND RESULTS: Using ACTION Registry-GWTG (Get-with-the-Guidelines), we evaluated patterns of P2Y12 antagonist use within 24 hours of admission in 100 228 ST elevation myocardial infarction (STEMI) and 158 492 Non-ST elevation myocardial infarction (NSTEMI) patients at 548 hospitals between October 2009 and September 2012. Rates of early P2Y12 antagonist use were approximately 90% among STEMI and 57% among NSTEMI patients. From 2009 to 2012, prasugrel use increased significantly from 3% to 18% (5% to 30% in STEMI; 2% to 10% in NSTEMI; P for trend <0.001 for all). During the same period, we observed a decrease in use of early but not discharge P2Y12 antagonist among NSTEMI patients. Although contraindicated, 3.0% of patients with prior stroke received prasugrel. Prasugrel was used in 1.9% of patients ≥75 years and 4.5% of patients with weight <60 kg. In both STEMI and NSTEMI, prasugrel was most frequently used in patients at the lowest predicted risk for bleeding and mortality. Despite lack of supporting evidence, prasugrel was initiated before cardiac catheterization in 18% of NSTEMI patients. CONCLUSIONS: With prasugrel as an antiplatelet treatment option, contemporary practice shows low uptake of prasugrel and delays in P2Y12 antagonist initiation among NSTEMI patients. We also note concerning evidence of inappropriate use of prasugrel, and inadequate targeting of this more potent therapy to maximize the benefit/risk ratio.

Twenty years' experience with the Swiss data registry for assisted reproductive medicine: outcomes, key trends and recommendations for improved practice.

QUESTIONS UNDER STUDY The impact of assisted reproductive technology (ART) on Swiss demography was quantified. From 1993 to 2012 the number of deliveries, including multiples, generated by ART was compared with overall delivery numbers. Swiss experts in ART collaborated in a consensus to increase successful outcomes, to reduce the incidence of complications of ART and to validate recommendations through statistical review of available data. METHODS Data generated between 1993 and 2012 and published by the Federal Office of Statistics (BfS) were compared with the Swiss database on ART (FIVNAT-CH) as organised by the Swiss Society of Reproductive Medicine (SGRM). From these analyses a panel of Swiss experts in ART extracted recommendations to improve current practice, to prevent complications related to ART and to recommend changes in current Swiss legislation dealing with ART. RESULTS Since 1993 the age of women giving birth rose together with the number of women asking for ART. This demographic trend was reflected in a rise in the number of deliveries generated by ART (in 2012: 2.2%) and the proportion of multiple births (in 2012: 17.6%). The outcome of ART was most negatively influenced by the age of the treated patient. The number of retrieved oocytes decisively impacted the likelihood of delivery, the risk of multiple births and the incidence of ovarian hyperstimulation syndrome. CONCLUSIONS Optimal ovarian stimulation should be designed for the retrieval of 10 to 15 oocytes per treatment. Swiss legislation should enable and stimulate a policy of elective single embryo transfer to avoid multiple births.

Gastric cancer survival amongst Hispanics- A Hispanic paradox? A case series study using the SEER 1973--2005 data registry

Stomach cancer is the fourth most common cancer in the world, and ranked 16th in the US in 2008. The age-adjusted rates among Hispanics were 2.8 times that of non-Hispanic Whites in 1998-2002. In spite of that, previous research has found that Hispanics with non-cardia adenocarcinoma of the stomach have a slightly better survival than non-Hispanic Whites. However, such previous research did not include a comparison with African-Americans, and it was limited to data released for the years 1973-2000 in the nine original Surveillance, Epidemiology, and End Results Cancer Registries. This finding was interpreted as related to the Hispanic Paradox, a phenomenon that refers to the fact that Hispanics in the USA tend to paradoxically have substantially better health than other ethnic groups in spite of what their aggregate socio-economic indicators would predict. We extended such research to the SEER 17 Registry, 1973-2005, with varying years of diagnosis per registry, and compared the survival of non-cardia adenocarcinoma of the stomach according to ethnicity (Hispanics, non-Hispanic Whites and African-Americans), while controlling for age, gender, marital status, stage of disease and treatment using Cox regression survival analysis. We found that Hispanic ethnicity by itself did not confer an advantage on survival from non-cardia adenocarcinoma of the stomach, but that being born abroad was independently associated with the apparent 'Hispanic Paradox' previously reported, and that such advantage was seen among foreign born persons across all race/ethnic groups.^

Research data finder : an institutional metadata repository

QUT’s new metadata repository (data registry), Research Data Finder, has been designed to promote the visibility and discoverability of QUT research datasets. Funded by the Australian National Data Service (ANDS), it will provide a qualitative snapshot of research data outputs created or collected by members of the QUT research community that are available via open or mediated access. As a fully integrated metadata repository Research Data Finder aligns with institutional sources of truth, such as QUT’s research administrative system, ResearchMaster, as well as QUT’s Academic Profiles system to provide high quality data descriptions that increase awareness of, and access to, shareable research data. In addition, the repository and its workflows are designed to foster smoother data management practices, enhance opportunities for collaboration and research, promote cross-disciplinary research and maximize existing research datasets. The metadata schema used in Research Data Finder is the Registry Interchange Format - Collections and Services (RIF-CS), developed by ANDS in 2009. This comprehensive schema is potentially complex for researchers; unlike metadata for publications, which are often made publicly available with the official publication, metadata for datasets are not typically available and need to be created. Research Data Finder uses a hybrid self-deposit and mediated deposit system. In addition to automated ingests from ResearchMaster (research project information) and Academic Profiles system (researcher information), shareable data is identified at a number of key “trigger points” in the research cycle. These include: research grant proposals; ethics applications; Data Management Plans; Liaison Librarian data interviews; and thesis submissions. These ingested records can be supplemented with related metadata including links to related publications, such as those in QUT ePrints. Records deposited in Research Data Finder are harvested by ANDS and made available to a national and international audience via Research Data Australia, ANDS’ discovery service for Australian research data. Researcher and research group metadata records are also harvested by the National Library of Australia (NLA) and these records are then published in Trove (the NLA’s digital information portal). By contributing records to the national infrastructure, QUT data will become more visible. Within Australia and internationally, many funding bodies have already mandated the open access of publications produced from publicly funded research projects, such as those supported by the Australian Research Council (ARC), or the National Health and Medical Research Council (NHMRC). QUT will be well placed to respond to the rapidly evolving climate of research data management. This project is supported by the Australian National Data Service (ANDS). ANDS is supported by the Australian Government through the National Collaborative Research Infrastructure Strategy Program and the Education Investment Fund (EIF) Super Science Initiative.

Collaborating to develop research data management services and collections

The Queensland University of Technology (QUT) Library, like many other academic and research institution libraries in Australia, has been collaborating with a range of academic and service provider partners to develop a range of research data management services and collections. Three main strategies are being employed and an overview of process, infrastructure, usage and benefits is provided of each of these service aspects. The development of processes and infrastructure to facilitate the strategic identification and management of QUT developed datasets has been a major focus. A number of Australian National Data Service (ANDS) sponsored projects - including Seeding the Commons; Metadata Hub / Store; Data Capture and Gold Standard Record Exemplars have / will provide QUT with a data registry system, linkages to storage, processes for identifying and describing datasets, and a degree of academic awareness. QUT supports open access and has established a culture for making its research outputs available via the QUT ePrints institutional repository. Incorporating open access research datasets into the library collections is an equally important aspect of facilitating the adoption of data-centric eresearch methods. Some datasets are available commercially, and the library has collaborated with QUT researchers, in the QUT Business School especially strongly, to identify and procure a rapidly growing range of financial datasets to support research. The library undertakes licensing and uses the Library Resource Allocation to pay for the subscriptions. It is a new area of collection development for with much to be learned. The final strategy discussed is the library acting as “data broker”. QUT Library has been working with researchers to identify these datasets and undertake the licensing, payment and access as a centrally supported service on behalf of researchers.

How much is that data in the window? Advertising your research data with QUT Library

Queensland University of Technology (QUT) Library offers a range of resources and services to researchers as part of their research support portfolio. This poster will present key features of two of the data management services offered by research support staff at QUT Library. The first service is QUT Research Data Finder (RDF), a product of the Australian National Data Service (ANDS) funded Metadata Stores project. RDF is a data registry (metadata repository) that aims to publicise datasets that are research outputs arising from completed QUT research projects. The second is a software and code registry, which is currently under development with the sole purpose of improving discovery of source code and software as QUT research outputs. RESEARCH DATA FINDER As an integrated metadata repository, Research Data Finder aligns with institutional sources of truth, such as QUT’s research administration system, ResearchMaster, as well as QUT’s Academic Profiles system to provide high quality data descriptions that increase awareness of, and access to, shareable research data. The repository and its workflows are designed to foster better data management practices, enhance opportunities for collaboration and research, promote cross-disciplinary research and maximise the impact of existing research data sets. SOFTWARE AND CODE REGISTRY The QUT Library software and code registry project stems from concerns amongst researchers with regards to development activities, storage, accessibility, discoverability and impact, sharing, copyright and IP ownership of software and code. As a result, the Library is developing a registry for code and software research outputs, which will use existing Research Data Finder architecture. The underpinning software for both registries is VIVO, open source software developed by Cornell University. The registry will use the Research Data Finder service instance of VIVO and will include a searchable interface, links to code/software locations and metadata feeds to Research Data Australia. Key benefits of the project include:improving the discoverability and reuse of QUT researchers’ code and software amongst QUT and the QUT research community; increasing the profile of QUT research outputs on a national level by providing a metadata feed to Research Data Australia, and; improving the metrics for access and reuse of code and software in the repository.

Proposta de metodologia usando regressões lineares no cálculo dos efeitos vibratórios do rebentamento de explosivos

Este trabalho apresenta o estudo das leis de propagação das velocidades de vibração resultantes do uso de explosivo em diferentes maciços. Foram efectuados estudos para três tipos de maciços diferentes, granito, quartzito e calcário. Efectuaram-se campanhas de monitorização e registo dos dados em cada uma das situações. Caracterizando e utilizando duas leis de propagação de velocidades no maciço, a de Johnson e Langefors, calculou-se as suas variáveis por método estatístico de regressões lineares múltiplas. Com a obtenção das variáveis fizeram-se estudos de previsão dos valores de vibração a obter utilizando a carga explosiva aplicada nos desmontes. Através dos valores de vibração obtidos em cada pega de fogo para cada tipo de maciço comparou-se quais das duas leis apresentam o valor de velocidade de vibração menor desviado do real. Conforme ficou verificado neste estudo, a equação de Langefors garante uma mais-valia da sua aplicação na previsão das velocidades de vibração pois joga favoravelmente a nível da segurança assim como apresenta um menor desvio face à equação de Johnson quando comparada com o valor real de vibração obtido. Com isto o método de utilização de regressões lineares múltiplas como cálculo dos efeitos vibratórios é extremamente vantajoso a nível de prevenção de danos e cálculo de velocidades de vibração inferiores ao imposto pela Norma.

Validation of Two US Risk Scores for Percutaneous Coronary Intervention in a Single-Center Portuguese Population of Patients with Acute Coronary Syndrome

INTRODUCTION: New scores have been developed and validated in the US for in-hospital mortality risk stratification in patients undergoing coronary angioplasty: the National Cardiovascular Data Registry (NCDR) risk score and the Mayo Clinic Risk Score (MCRS). We sought to validate these scores in a European population with acute coronary syndrome (ACS) and to compare their predictive accuracy with that of the GRACE risk score. METHODS: In a single-center ACS registry of patients undergoing coronary angioplasty, we used the area under the receiver operating characteristic curve (AUC), a graphical representation of observed vs. expected mortality, and net reclassification improvement (NRI)/integrated discrimination improvement (IDI) analysis to compare the scores. RESULTS: A total of 2148 consecutive patients were included, mean age 63 years (SD 13), 74% male and 71% with ST-segment elevation ACS. In-hospital mortality was 4.5%. The GRACE score showed the best AUC (0.94, 95% CI 0.91-0.96) compared with NCDR (0.87, 95% CI 0.83-0.91, p=0.0003) and MCRS (0.85, 95% CI 0.81-0.90, p=0.0003). In model calibration analysis, GRACE showed the best predictive power. With GRACE, patients were more often correctly classified than with MCRS (NRI 78.7, 95% CI 59.6-97.7; IDI 0.136, 95% CI 0.073-0.199) or NCDR (NRI 79.2, 95% CI 60.2-98.2; IDI 0.148, 95% CI 0.087-0.209). CONCLUSION: The NCDR and Mayo Clinic risk scores are useful for risk stratification of in-hospital mortality in a European population of patients with ACS undergoing coronary angioplasty. However, the GRACE score is still to be preferred.

Clinical and molecular characterization of the potential CF disease modifier syntaxin 1A

Cystic fibrosis (CF) is caused by mutations in the CF transmembrane conductance regulator gene (CFTR). Disease severity in CF varies greatly, and sibling studies strongly indicate that genes other than CFTR modify disease outcome. Syntaxin 1A (STX1A) has been reported as a negative regulator of CFTR and other ion channels. We hypothesized that STX1A variants act as a CF modifier by influencing the remaining function of mutated CFTR. We identified STX1A variants by genomic resequencing patients from the Bernese CF Patient Data Registry and applied linear mixed model analysis to establish genotype-phenotype correlations, revealing STX1A rs4363087 (c.467-38A>G) to significantly influence lung function. The same STX1A risk allele was recognized in the European CF Twin and Sibling Study (P=0.0027), demonstrating that the genotype-phenotype association of STX1A to CF disease severity is robust enough to allow replication in two independent CF populations. rs4363087 is in linkage disequilibrium to the exonic variant rs2228607 (c.204C>T). Considering that neither rs4363087 nor rs2228607 changes the amino-acid sequence of STX1A, we investigated their effects on mRNA level. We show that rs2228607 reinforces aberrant splicing of STX1A mRNA, leading to nonsense-mediated mRNA decay. In conclusion, we demonstrate the clinical relevance of STX1A variants in CF, and evidence the functional relevance of STX1A variant rs2228607 at molecular level. Our findings show that genes interacting with CFTR can modify CF disease progression.European Journal of Human Genetics advance online publication, 10 April 2013; doi:10.1038/ejhg.2013.57.

External validation study of a clinical prediction rule for ambulation outcomes after traumatic spinal cord injury

The main objective of this study was to determine the external validity of a clinical prediction rule developed by the European Multicenter Study on Human Spinal Cord Injury (EM-SCI) to predict the ambulation outcomes 12 months after traumatic spinal cord injury. Data from the North American Clinical Trials Network (NACTN) data registry with approximately 500 SCI cases were used for this validity study. The predictive accuracy of the EM-SCI prognostic model was evaluated using calibration and discrimination based on 231 NACTN cases. The area under the receiver-operating-characteristics curve (ROC) curve was 0.927 (95% CI 0.894 – 0.959) for the EM-SCI model when applied to NACTN population. This is lower than the AUC of 0.956 (95% CI 0.936 – 0.976) reported for the EM-SCI population, but suggests that the EM-SCI clinical prediction rule distinguished well between those patients in the NACTN population who were able to achieve independent ambulation and those who did not achieve independent ambulation. The calibration curve suggests that higher the prediction score is, the better the probability of walking with the best prediction for AIS D patients. In conclusion, the EM-SCI clinical prediction rule was determined to be generalizable to the adult NACTN SCI population.^

Mortality following hip arthroplasty—inappropriate use of National Joint Registry (NJR) data

Mortality following hip arthroplasty is affected by a large number of confounding variables each of which must be considered to enable valid interpretation. Relevant variables available from the 2011 NJR data set were included in the Cox model. Mortality rates in hip arthroplasty patients were lower than in the age-matched population across all hip types. Age at surgery, ASA grade, diagnosis, gender, provider type, hip type and lead surgeon grade all had a significant effect on mortality. Schemper's statistic showed that only 18.98% of the variation in mortality was explained by the variables available in the NJR data set. It is inappropriate to use NJR data to study an outcome affected by a multitude of confounding variables when these cannot be adequately accounted for in the available data set.

Journal research data policy registry

Presentation on the journal research data policy registry at the Repository Fringe 2015.

Project report: Journal Research Data Policy Registry

This document is a report from Spotlight Data to Jisc. It describes the project findings and steps required to build a prototype journal research data policy system.