Long term effects of gestational hypertension and pre-eclampsia on kidney function : Record linkage study

This research was funded by the Chief Scientists Office, Scotland (CZH/4/659).

Documentation

In order to become better prepared to support Research Data Management (RDM) practices in sciences and engineering, Queen’s University Library, together with the University Research Services, conducted a research study of all ranks of faculty members, as well as postdoctoral fellows and graduate students at the Faculty of Engineering & Applied Science, Departments of Chemistry, Computer Science, Geological Sciences and Geological Engineering, Mathematics and Statistics, Physics, Engineering Physics & Astronomy, School of Environmental Studies, and Geography & Planning in the Faculty of Arts and Science.

Der Umgang mit Forschungsdaten an der Leibniz Universität Hannover. Auswertung einer Umfrage und ergänzender Interviews 2015/16

Im Kontext des Projekts „Entwicklung eines institutionellen Konzepts zum Forschungsdatenmanagement an der Leibniz Universität Hannover“ wurden 2015/16 eine universitätsinterne Online-Umfrage und ergänzende Interviews durchgeführt. Deren Ergebnisse ermöglichen einen Einblick in den derzeitigen Umgang mit Forschungsdaten und eine Abschätzung des Bedarfs an Beratung, Schulung und technischer Infrastruktur seitens des wissenschaftlichen Personals. In diesem Bericht werden die Daten präsentiert und ausgewertet.

Ithaka S+R, Jisc and RLUK UK survey of academics 2015

This report is the second Ithaka S+R / Jisc / RLUK survey of UK academics. It asks of the UK research community their views on resource discovery, their use of these resources (online and digital), attitudes to research data management, and much more. It provides a powerful insight into how researchers view their own behaviour and the research environment within the UK today. It gives us pointers to how we can provide further support to researchers and first indications as to where resources should be best invested in the future.

Caracterización sociodemográfica de las enfermedades huérfanas en Colombia

Las enfermedades huérfanas en Colombia, se definen como aquellas crónicamente debilitantes, que amenazan la vida, de baja prevalencia (menor 1/5000) y alta complejidad. Se estima que a nivel mundial existen entre 6000 a 8000 enfermedades raras diferentes(1). Varios países a nivel mundial individual o colectivamente, en los últimos años han creado políticas e incentivos para la investigación y protección de los pacientes con enfermedades raras. Sin embargo, a pesar del creciente número de publicaciones; la información sobre su etiología, fisiología, historia natural y datos epidemiológicos persiste escasa o ausente. Los registros de pacientes, son una valiosa herramienta para la caracterización de las enfermedades, su manejo y desenlaces con o sin tratamiento. Permiten mejorar políticas de salud pública y cuidado del paciente, contribuyendo a mejorar desenlaces sociales, económicos y de calidad de vida. En Colombia, bajo el decreto 1954 de 2012 y las resoluciones 3681 de 2013 y 0430 de 2013 se creó el fundamento legal para la creación de un registro nacional de enfermedades huérfanas. El presente estudio busca determinar la caracterización socio-demográfica y la prevalencia de las enfermedades huérfanas en Colombia en el periodo 2013. Métodos: Se realizó un estudio observacional de corte transversal de fuente secundaria sobre pacientes con enfermedades huérfanas en el territorio nacional; basándose en el registro nacional de enfermedades huérfanas obtenido por el Ministerio de Salud y Protección Social en el periodo 2013 bajo la normativa del decreto 1954 de 2012 y las resoluciones 3681 de 2013 y 0430 de 2013. Las bases de datos obtenidas fueron re-categorizadas en Excel versión 15.17 para la extracción de datos y su análisis estadístico posterior, fue realizado en el paquete estadístico para las ciencias sociales (SPSS v.20, Chicago, IL). Resultados: Se encontraron un total de 13173 pacientes con enfermedades huérfanas para el 2013. De estos, el 53.96% (7132) eran de género femenino y el 46.03% (6083) masculino; la mediana de la edad fue de 28 años con un rango inter-cuartil de 39 años, el 9% de los pacientes presentaron discapacidad. El registro contenía un total de 653 enfermedades huérfanas; el 34% del total de las enfermedades listadas en nuestro país (2). Las patologías más frecuentes fueron el Déficit Congénito del Factor VIII, Miastenia Grave, Enfermedad de Von Willebrand, Estatura Baja por Anomalía de Hormona de Crecimiento y Displasia Broncopulmonar. Discusión: Se estimó que aproximadamente 3.3 millones de colombianos debían tener una enfermedad huérfana para el 2013. El registro nacional logró recolectar datos de 13173 (0.4%). Este bajo número de pacientes, marca un importante sub-registro que se debe al uso de los códigos CIE-10, desconocimiento del personal de salud frente a las enfermedades huérfanas y clasificación errónea de los pacientes. Se encontraron un total de 653 enfermedades, un 34% de las enfermedades reportadas en el listado nacional de enfermedades huérfanas (2) y un 7% del total de enfermedades reportadas en ORPHANET para el periodo 2013 (3). Conclusiones: La recolección de datos y la sensibilización sobre las enfermedades huérfanas al personal de salud, es una estrategia de vital importancia para el diagnóstico temprano, medidas específicas de control e intervenciones de los pacientes. El identificar apropiadamente a los pacientes con este tipo de patologías, permite su ingreso en el registro y por ende mejora el sub-registro de datos. Sin embargo, cabe aclarar que el panorama ideal sería, el uso de un sistema de recolección diferente al CIE-10 y que abarque en mayor medida la totalidad de las enfermedades huérfanas.

Understanding the legal implications of data sharing, access and reuse in the Australian research landscape

Researchers are increasingly involved in data-intensive research projects that cut across geographic and disciplinary borders. Quality research now often involves virtual communities of researchers participating in large-scale web-based collaborations, opening their earlystage research to the research community in order to encourage broader participation and accelerate discoveries. The result of such large-scale collaborations has been the production of ever-increasing amounts of data. In short, we are in the midst of a data deluge. Accompanying these developments has been a growing recognition that if the benefits of enhanced access to research are to be realised, it will be necessary to develop the systems and services that enable data to be managed and secured. It has also become apparent that to achieve seamless access to data it is necessary not only to adopt appropriate technical standards, practices and architecture, but also to develop legal frameworks that facilitate access to and use of research data. This chapter provides an overview of the current research landscape in Australia as it relates to the collection, management and sharing of research data. The chapter then explains the Australian legal regimes relevant to data, including copyright, patent, privacy, confidentiality and contract law. Finally, this chapter proposes the infrastructure elements that are required for the proper management of legal interests, ownership rights and rights to access and use data collected or generated by research projects.

Management and Analysis of Unstructured Construction Data Types

Compared with structured data sources that are usually stored and analyzed in spreadsheets, relational databases, and single data tables, unstructured construction data sources such as text documents, site images, web pages, and project schedules have been less intensively studied due to additional challenges in data preparation, representation, and analysis. In this paper, our vision for data management and mining addressing such challenges are presented, together with related research results from previous work, as well as our recent developments of data mining on text-based, web-based, image-based, and network-based construction databases.

Current cancer research on cancer patient supportive care and pain management.

NTIS: PB81-929403.

Semantic distributed database management with applications to the Internet dissemination of environmental data

The research presented in this dissertation is comprised of several parts which jointly attain the goal of Semantic Distributed Database Management with Applications to Internet Dissemination of Environmental Data. ^ Part of the research into more effective and efficient data management has been pursued through enhancements to the Semantic Binary Object-Oriented database (Sem-ODB) such as more effective load balancing techniques for the database engine, and the use of Sem-ODB as a tool for integrating structured and unstructured heterogeneous data sources. Another part of the research in data management has pursued methods for optimizing queries in distributed databases through the intelligent use of network bandwidth; this has applications in networks that provide varying levels of Quality of Service or throughput. ^ The application of the Semantic Binary database model as a tool for relational database modeling has also been pursued. This has resulted in database applications that are used by researchers at the Everglades National Park to store environmental data and to remotely-sensed imagery. ^ The areas of research described above have contributed to the creation TerraFly, which provides for the dissemination of geospatial data via the Internet. TerraFly research presented herein ranges from the development of TerraFly's back-end database and interfaces, through the features that are presented to the public (such as the ability to provide autopilot scripts and on-demand data about a point), to applications of TerraFly in the areas of hazard mitigation, recreation, and aviation. ^

Looking through the haze of discontent : smokers as a data source

In the case of industrial relations research, particularly that which sets out to examine practices within workplaces, the best way to study this real-life context is to work for the organisation. Studies conducted by researchers working within the organisation comprise some of the (broad) field’s classic research (cf. Roy, 1954; Burawoy, 1979). Participant and non-participant ethnographic research provides an opportunity to investigate workplace behaviour beyond the scope of questionnaires and interviews. However, we suggest that the data collected outside a workplace can be just as important as the data collected inside the organisation’s walls. In recent years the introduction of anti-smoking legislation in Australia has meant that people who smoke cigarettes are no longer allowed to do so inside buildings. Not only are smokers forced outside to engage in their habit, but they have to smoke prescribed distances from doorways, or in some workplaces outside the property line. This chapter considers the importance of cigarette-smoking employees in ethnographic research. Through data collected across three separate research projects, the chapter argues that smokers, as social outcasts in the workplace, can provide a wealth of important research data. We suggest that smokers also appear more likely to provide stories that contradict the ‘management’ or ‘organisational’ position. Thus, within the haze of smoke, researchers can uncover a level of discontent with the ‘corporate line’ presented inside the workplace. There are several aspects to the increased propensity of smokers to provide a contradictory or discontented story. It may be that the researcher is better able to establish a rapport with smokers, as there is a removal of the artificial wall a researcher presents as an outsider. It may also be that a research location physically outside the boundaries of the organisation provides workers with the freedom to express their discontent. The authors offer no definitive answers; rather, this chapter is intended to extend our knowledge of workplace research through highlighting the methodological value in using smokers as research subjects. We present the experience of three separate case studies where interactions with cigarette smokers have provided either important organisational data or alternatively a means of entering what Cunnison (1966) referred to as the ‘gossip circle’. The final section of the chapter draws on the evidence to demonstrate how the community of smokers, as social outcasts, are valuable in investigating workplace issues. For researchers and practitioners, these social outcasts may very well prove to be an important barometer of employee attitudes; attitudes that perhaps cannot be measured through traditional staff surveys.

Future-proofing : the academic library’s role in e-research support

Purpose – The paper describes a project created to enhance e-research support activities within an Australian university, based on environmental scanning of e-research activities and funding both nationally and internationally. Participation by the university library is also described.----- Design/methodology/approach – The paper uses a case study that describes the stages of a project undertaken to develop an academic library’s capacity to offer e-research support to its institution’s research community.----- Findings – While the outcomes of the project have been successfully achieved, the work needs to be continued and eventually mainstreamed as core business in order to keep pace with developments in e-research. The continual skilling up of the university’s researchers and research support staff in e-research activities is imperative in reaching the goal of becoming a highly competitive research institution.----- Research limitations/implications – Although a single case study, the work has been contextualised within the national research agenda.----- Practical implications – The paper provides a project model that can adapted within an academic library without external or specialist skills. It is also scalable and can be applied at a divisional or broader level.----- Originality/value – The paper highlights the drivers for research investment in Australia and provides a model of how building e-research support activities can leverage this investment and contribute towards successful research activity.

ACE research briefing paper 001 : the role of family in new business start-ups

This report uses data from the first two years of the CAUSEE study and focuses on the role of family in new business start-ups. While CAUSEE was not designed specifically to probe deeply into family matters the study does reveal interesting information on family orientated aspects including parental role models, family involvement on the start-up team, and family as a source of funding and advice. These findings can also be related to other information gathered as part of the comprehensive phone interviews that are used to gather the research data for CAUSEE. Furthermore we are also able to compare firm founders and 'Regular' nascent firm and young firm start-ups with their 'High Potential' counterparts in terms of their degrees of family involvement. Unless otherwise stated any differences or effects we comment on are 'statistically significant' at the five per cent level - that is, they are likely to reflect true differences or effects in the entire population of Australian start-ups.

Using data mining to predict road crash count with a focus on skid resistance values

Road crashes cost world and Australian society a significant proportion of GDP, affecting productivity and causing significant suffering for communities and individuals. This paper presents a case study that generates data mining models that contribute to understanding of road crashes by allowing examination of the role of skid resistance (F60) and other road attributes in road crashes. Predictive data mining algorithms, primarily regression trees, were used to produce road segment crash count models from the road and traffic attributes of crash scenarios. The rules derived from the regression trees provide evidence of the significance of road attributes in contributing to crash, with a focus on the evaluation of skid resistance.

Collaborative academic/practitioner research in project management : examples and applications

Purpose – The purpose of this paper is to present a cost-benefit interpretation of academic-practitioner research by describing and analysing several recent relevant examples of academic-practitioner research with a focus on doctoral theses carried out at universities and business schools in clusters of research centred in North America, Australia and Europe. Design/methodology/approach – Using case study examples, a value proposition framework for undertaking collaborative research for higher degree level study is developed and presented. Findings – Value proposition benefits from this level of collaborative research can be summarised as enhancing competencies at the individual and organisational level as well as providing participating universities with high-quality candidates/students and opportunities for industry engagement. The project management (PM) professional bodies can also extend PM knowledge but they need to be prepared to provide active support. Practical implications – A model for better defining the value proposition of collaborative research from a range of stakeholder perspectives is offered that can be adapted for researchers and industry research sponsors. Originality/value – Few papers offer a value proposition framework for explaining collaborative research benefits. This paper addresses that need.

Professional identity of management accountants : leadership in changing environments

The professional identity of management accountants (MAs) is evolving. According to 8,727 descriptors expressed by 1,158 participants, a range of characteristics of MAs are competing in shaping the identity of future MAs. Respondents strongly valued qualities such as professional principles, hard work, intelligence, analytical and forward thinking in MAs. Further, more innovative, dynamic and people-oriented qualities were strongly suggested for future MAs, with roles relating to multi-skilled business integrator, business partner/advisor, leader, change agent, and decision enabler/maker. Cultivating leadership qualities in the management accounting profession is critical according to participants. Projecting a positive image of the profession and CIMA, and innovative training in management and leadership skills can further support MAs to meet future challenges. Most of all, understanding business and continued personal development by individual MAs is highly valued in shaping the future leadership identity of MAs. Our quantitative data show positive relationships between the professional identification, image and reputation, and leadership qualities of MAs. This suggests that the more one identifies with the profession, the more one is likely to report higher levels of leadership qualities that support members to internalise the desired meaning of their profession and to create a positive image and reputation. After the financial crisis of 2008–2009, the image of financial professions has been tarnished and unpredictable markets and unstable employment opportunities have challenged the profession across all sectors. Many respondents, especially CIMA members, suggested that the turmoil of the financial crisis did not impact negatively but rather elevated the pivotal role of MAs in contributing to cost efficiency and value creation.