Who's minding the shop?:the role of Canadian research ethics boards in the creation and uses of registries and biobanks

Abstract. Background. The amount of research utilizing health information has increased dramatically over the last ten years. Many institutions have extensive biobank holdings collected over a number of years for clinical and teaching purposes, but are uncertain as to the proper circumstances in which to permit research uses of these samples. Research Ethics Boards (REBs) in Canada and elsewhere in the world are grappling with these issues, but lack clear guidance regarding their role in the creation of and access to registries and biobanks. Methods. Chairs of 34 REBS and/or REB Administrators affiliated with Faculties of Medicine in Canadian universities were interviewed. Interviews consisted of structured questions dealing with diabetes-related scenarios, with open-ended responses and probing for rationales. The two scenarios involved the development of a diabetes registry using clinical encounter data across several physicians' practices, and the addition of biological samples to the registry to create a biobank. Results. There was a wide range of responses given for the questions raised in the scenarios, indicating a lack of clarity about the role of REBs in registries and biobanks. With respect to the creation of a registry, a minority of sites felt that consent was not required for the information to be entered into the registry. Whether patient consent was required for information to be entered into the registry and the duration for which the consent would be operative differed across sites. With respect to the creation of a biobank linked to the registry, a majority of sites viewed biobank information as qualitatively different from other types of personal health information. All respondents agreed that patient consent was needed for blood samples to be placed in the biobank but the duration of consent again varied. Conclusion. Participants were more attuned to issues surrounding biobanks as compared to registries and demonstrated a higher level of concern regarding biobanks. As registries and biobanks expand, there is a need for critical analysis of suitable roles for REBs and subsequent guidance on these topics. The authors conclude by recommending REB participation in the creation of registries and biobanks and the eventual drafting of comprehensive legislation.

SWAT 1:what effects do site visits by the principal investigator have on recruitment in a multicentre randomized trial?

The SWAT (Study Within A Trial) programme has been established to develop a series of studies that would embed research within research, so as to resolve uncertainties about the effects of different ways of designing, conducting, analyzing and interpreting evaluations of health and social care. It was described in an Education piece in the Journal of Evidence-Based Medicine in 2012. We have now prepared the first example of the design summary for a SWAT, using the template that will be used for other SWAT. This is presented in this article.

Hydrophilic Interaction Ultra-High Performance Liquid Chromatography Coupled with Triple-Quadrupole Mass Spectrometry for Determination of Nucleosides and Nucleobases in Animal Horns

Traditional Chinese Medicines (TCMs) derived from animal horns are one of the most important types of Chinese medicine. In the present study, a fast and sensitive analytical method was established for qualitative and quantitative determination of 14 nucleosides and nucleobases in animal horns using hydrophilic interaction ultra-high performance liquid chromatography coupled with triple-quadruple tandem mass spectrometry (HILIC-UPLC-QQQ-MS/MS) in selective reaction monitoring (SRM) mode. The method was optimized and validated, and showed good linearity, precision, repeatability, and accuracy. The method was successfully used to determine contents of the 14 nucleosides and nucleobases in 25 animal horn samples. Hierarchical clustering analysis (HCA) and principal component analysis (PCA) were performed and the 25 samples were thereby divided into two groups, which agreed with taxonomy. The method may enable quick and effective search of substitutes for precious horns.

Nurturing attachments in looked after children: a feasibility study of a group-based programme for carers

Introduction: The attachment related difficulties of Looked after Children are well recognised in literature with difficulties linked to early experiences hypothesised to be perpetuated by experiences of the care system itself. Recent policy guidelines have emphasised the importance of relationships for children in care, one of the most important being with their primary carer. Golding (2014) published a group format training resource entitled ‘Nurturing Attachments’ which aims to promote ‘therapeutic parenting’; however there is limited knowledge on the feasibility of this intensive approach.
Aims: To assess the feasibility of Nurturing Attachments through exploring (i.) recruitment, retention and attrition, (ii.) initial outcomes, (iii.) acceptability and (iv.) ability of the programme to be delivered in line with the manual content and structure.
Method Two Health and Social Care Trusts in NI participated in the study by facilitating a Nurturing Attachments group in each site with adoptive parents, foster carers and kinship carers (N = 26). Carers completed pre and post measures to explore initial outcome, completing an evaluation questionnaire to explore acceptability. Acceptability was also explored with Trust stakeholders and group facilitators through focus group and interview. To explore if the manual can be delivered as intended, each group completed debrief tools.
Results: The overall response rate for uptake was 13.9%, which impacted on engagement for a ‘treatment as usual’ group. Once engaged in the programme, attrition was low and attendance was high. Initial outcomes have shown positive effects for both young person and carers. Feedback suggests a positive response regarding acceptability with limited expressed concern. The manual can be delivered in a standardised way; however can be flexible enough to allow for group processes.
Conclusions: Further research is needed to continue to explore efficacy, however the current study has provided supporting evidence that Nurturing Attachments as an intervention has positively impacted on many levels of the LAAC system.

Effects of a green tax reform in Portugal: a general equilibrium analysis

Do ponto de vista da política económica, existe a possibilidade de utilizar a receita dos impostos ambientais para baixar os impostos sobre o trabalho, promovendo assim o emprego. Esta oportunidade surge na literatura como forma dos países industrializados responderem a um duplo desafio: um crescente nível de poluição e um decrescente nível de emprego. Alguns países tomaram já decisões no sentido de alcançar o “duplo dividendo”: melhorias ambientais e diminuição do desemprego. Os resultados teóricos, na sua maioria cépticos em relação à verificação do segundo dividendo, são substancialmente contrariados por uma série de estudos que utilizam modelos de equilíbrio geral. Pretendese com este trabalho fazer uma simulação para a economia portuguesa de uma reforma fiscal ambiental com as características referidas e a verificação da existência do “duplo dividendo”, através de um modelo computacional de equilíbrio geral. Para além disso, é feita uma análise dos impactos do Mercado Europeu de Licenças de Emissão, ao nível sectorial e regional, em Portugal, utilizando dados microeconómicos, com o objectivo de estudar as consequências ao nível das trasacções entre sectores e efeitos distributivos entre regiões.

Micropropagation in elite corck oak trees: a tool for suber production improvement?

Dada a extrema importância económica e ambiental que o montado de sobro tem em Portugal, e dado o declínio deste devido a várias razões (e.g. doença, idade das plantas) é premente desenvolver estratégias de preservação de sobreiros elite e optimizar técnicas para a propagação destes genótipos. No primeiro Capítulo expõe-se uma breve introdução sobre o montado actual e as técnicas actuais de regeneração/propagação do sobreiro. Descreve-se ainda as principais técnicas de preservação e avaliação de estabilidade genética referidas na literatura para sobreiro e outras lenhosas. No Capítulo II é apresentado um estudo de melhoramento das condições actuais de maturação de embriões somáticos de sobreiro com vista a aperfeiçoar o processo de conversão em plantas. Neste capítulo é apresentado um protocolo melhorado em relação ao actual que permite um desenvolvimento dos embriões somáticos dum modo semelhante aos embriões zigóticos em termos de substâncias de reserva. O Capítulo III mostra um estudo efectuado com o objectivo principal de avaliar estabilidade genética durante todo o processo de embriogénese somática. Neste capítulo são apresentados resultados duma análise feita por RAPD em fases distintas da embriogénese somática de sobreiro. Neste estudo mostra-se que não existem diferenças significativas entre plantas de campo, embriões somáticos e plantas regeneradas. No Capítulo VI, pretende-se complementar o estudo anterior. Neste Capítulo descreve-se a dinâmica do ciclo celular durante as primeiras fases de embriogénese somática na presença de reguladores de crescimento. Este trabalho permitiu concluir a importância dos reguladores de crescimento na indução e perceber o peso do factor genótipo durante o processo. Considerando os resultados anteriores, a necessidade de um processo eficiente de preservação de genótipos elite torna-se fundamental. No Capítulo V descreve-se um protocolo de criopreservação eficiente sem recursos a substâncias tóxicas. Nesta secção é ainda feita uma análise de variabilidade genética após criopreservação através de FCM, AFLP e SSR. Todos os resultados obtidos anteriormente são postos a prova no Capítulo VI onde se faz uma monitorização extensiva de 10 genótipos elite, tendo em conta a sua capacidade de produção de cortiça, através do processo de embriogénese somática. Durante esta secção são utilizados os protocolos desenvolvidos anteriormente e avaliados na sua eficiência. Neste capítulo é descrita a integração de vários segmentos deste estudo num só protocolo eficiente de regeneração e preservação de sobreiros através de embriogénese somática. Finalmente, no Capítulo VI são apresentadas as conclusões da presente Tese de Doutoramento, com especial incidência para linhas de investigação futuras a serem tomadas. Discute-se a importância deste novo protocolo na optimização da produção da cortiça e traçam-se possíveis aplicações alternativas.

Genetic evidence fails to discriminate between Macroramphosus gracilis Lowe 1839 and Macroramphosus scolopax Linnaeus 1758 in Portuguese waters

Fish belonging to the genus Macroramphosus are distributed throughout the Atlantic, Indian and PaciWc oceans. Some authors consider this genus monotypic, Macroramphosus scolopax being the only valid species. Other authors consider (based on several morphological and ecological characters) that another species (Macroramphosus gracilis) exists and occurs frequently in sympatry with the Wrst one. Intermediate forms are also reported in literature. In this paper, using the mitochondrial control region and the nuclear Wrst S7 intron markers, we failed to Wnd genetic diVerences between individuals considered to belong to both species as well as the intermediate forms. Our results suggest that in the northeastern Atlantic, Macroramphosus is represented by a single species, M. scolopax, with diVerent morphotypes interbreeding in the sampling areas.

Begrifflichkeiten in der Wettbewerberforschung : ein Ordnungsversuch

Der vorliegende Artikel bezieht sich auf die unterschiedlichen Begrifflichkeiten, die im Umfeld der Wettbewerberforschung in der Literatur Verwendung finden. Neben den Begriffen des angloamerikanischen Sprachraums (Competitive Intelligence, Competitor Intelligence und Competitor Analyse) existieren für den deutschsprachigen Raum (Wettbewerber-, Konkurrenten-, Wettbewerbs- und Konkurrenzanalyse) ebenfalls verschiedenartige Begriffe, denen in der Literatur eine häufig unterschiedliche Verwendung zu Teil wird. Dieser Artikel baut einen Ordnungsansatz auf, der die angesprochenen Begrifflichkeiten in eine Struktur bringt, um somit eine klare inhaltliche Trennung der einzelnen Begriffe sowie eine in Relation bringende Darstellung aufbauen zu können. Dies ermöglicht eine ambiguitätsfreie Verwendung innerhalb der wissenschaftlichen Arbeit durch definitorisch fixierte Begriffsinhalte.

A Crisis in Physics Education: Games to the Rescue!

An education in Physics develops both strong cognitive and practical skills. These are well-matched to the needs of employers, from engineering to banking. Physics provides the foundation for all engineering and scientific disciplines including computing technologies, aerospace, communication, and also biosciences and medicine. In academe, Physics addresses fundamental questions about the universe, the nature of reality, and of the complex socio-economic systems comprising our daily lives. Yet today, there are emerging concerns about Physics education: Secondary school interest in Physics is falling, as is the number of Physics school teachers. There is clearly a crisis in physics education; recent research has identified principal factors. Starting from a review of these factors, and from recommendations of professional bodies, this paper proposes a novel solution – the use of Computer Games to teach physics to school children, to university undergraduates and to teacher-trainees.

Development of new technologies for the selective removal of volatile compounds with applications in forensic science and natural aromas

Tese de doutoramento, Farmácia (Química Farmacêutica e Terapêutica), Universidade de Lisboa, Faculdade de Farmácia, 2015

Foodies in the UK: A Sense of Self, Connection and Belonging Beyond the Passion?

The global rise of the Foodie movement has attracted some research attention as well as critique in the food industry trend followers, but little research attention in marketing research. The present study looks at the ‘Foodie’ phenomenon in the UK and aims to extend how the notion has been coined in literature through a qualitative investigation of a sample of self-professed Foodies. The objective is to provide an in-depth understanding of what it means to be a Foodie at the individual and group levels, probing attitudes, motivations and self-awareness. Results indicate that the term Foodie cannot be used as an implicit definition of someone ‘simply interested in food’; the capacity of the Foodie may be dependent on individual involvement and the level of importance along the five emerging themes; these being: Learning and discovery; Pleasure and enjoyment; Inspirational influences; Quality; and Experiencing food as an individual and in connection with others. Findings imply that there might be different levels of Foodies, leading to a start on developing a Foodie Typology. The study poses implications for food marketers and researchers that can assist in more effective segmentation, efficient targeting and tailored positioning, as well as opportunities for future research.

Poetry and feminine crafts in the letters of the young Marquise of Alorna (1750-1839)

abstract : Taking as a starting point the association between embroidery and language conveyed by the Greek myth of Filomela and Procne, this article examines the relationship between social status and ornaments like embroidery and lace. In order to illustrate this relationship an example is selected form the letters exchanged between the Marquise of Alorna and her Father where a connection is established between the production of these 'feminine' crafts, women's culture and womens writing, in the XVIIIth Century