First Line Research Data Management for Life Sciences: a Case Study

Modern life sciences studies depend on the collection, management and analysis of comprehensive datasets in what has become data-intensive research. Life science research is also characterised by having relatively small groups of researchers. This combination of data-intensive research performed by a few people has led to an increasing bottleneck in research data management (RDM). Parallel to this, there has been an urgent call by initiatives like FAIR and Open Science to openly publish research data which has put additional pressure on improving the quality of RDM. Here, we reflect on the lessons learnt by DataHub Maastricht, a RDM support group of the Maastricht University Medical Centre (MUMC+) in Maastricht, the Netherlands, in providing first-line RDM support for life sciences. DataHub Maastricht operates with a small core team, and is complemented with disciplinary data stewards, many of whom have joint positions with DataHub and a research group. This organisational model helps creating shared knowledge between DataHub and the data stewards, including insights how to focus support on the most reusable datasets. This model has shown to be very beneficial given limited time and personnel. We found that co-hosting tailored platforms for specific domains, reducing storage costs by implementing tiered storage and promoting cross-institutional collaboration through federated authentication were all effective features to stimulate researchers to initiate RDM. Overall, utilising the expertise and communication channel of the embedded data stewards was also instrumental in our RDM success. Looking into the future, we foresee the need to further embed the role of data stewards into the lifeblood of the research organisation, along with policies on how to finance long-term storage of research data. The latter, to remain feasible, needs to be combined with a further formalising of appraisal and reappraisal of archived research data

Understanding Self-Construction of Health among the Slum Dwellers of India : A Culture-Centered Approach

Disembarking from a traditional approach of narrow hazardous environmental and structural conditions in understanding urban slums' health problems and moving towards a new notion of what constitutes health for slum dwellers will open a new avenue to recognise whether and how health is being prioritised in disadvantaged settings. Drawing on in-depth semi-structured interviews with a total of 67 men and 68 women from Kolkata slums and 62 men and 48 women from Bangalore slums, this study explored how knowledge, social realities, material and symbolic drivers of a place interweave in shaping slum-dwellers' patterned way of understanding health, and the ways health and illnesses are managed. The current study adds to the growing evidence that ordinary members of the urban slums can articulate critical linkages between their everyday sociocultural realities and health conditions, which can support the design and delivery of interventions to promote wellbeing. The concept of health is not confined to an abstract idea but manifested in slum-dwellers' sporadic practices of preventive and curative care as well as everyday living arrangements, where a complex arrangement of physical, psychological, financial, sociocultural and environmental dimensions condition their body and wellbeing

Obstructive sleep apnoea and sexual function in men

Obstructive sleep apnoea (OSA) is associated with sexual dysfunction. Untreated OSA and erectile dysfunction (ED) have both been identified as being indicative of a high risk of developing cardiovascular disease. Treatments for ED, such as testosterone supplementation or PDE-5 inhibitors, and for OSA, such as Continuous Positive Airways Pressure (CPAP) are both readily available. The effects of these treatments on the other associated conditions have not been fully assessed. The efficacy of testosterone supplementation, in untreated OSA, on sexual function and quality of life has not been investigated. PDE-5 inhibitors are an established treatment for erectile dysfunction, however, there is a paucity of information regarding their efficacy in OSA, and there is a theoretical risk of worsening of OSA with their use. CPAP, in some observational and non-treatment or alternative treatment controlled studies, has been shown to improve erection function in men with OSA, however the majority of these studies have been in men with OSA, with and without ED. Two randomised controlled trials investigating the effects of testosterone in untreated OSA (n=67), and the effects of CPAP and a PDE-5 inhibitor in men with OSA and ED using a factorial design (n=61) were performed. Sleep, sexual function and quality of life was assessed. CPAP increased the quantity of nocturnal erections and a PDE-5 inhibitor improved their quality. However, neither CPAP use, exogenous testosterone nor a PDE-5 inhibitor improved subjective erectile function in men with OSA. Post-hoc analysis showed that adherent CPAP use (>4hours per night) increased subjective erectile function and sexual desire, as well as several parameters of quality of life in men with OSA and ED. Testosterone also increased sexual desire in men with OSA

Barrett's esophagus and its association with hiatal hernia, cigarette smoking and colonic tumors

Introduction and Aims Barrett's esophagus (BE) is a premalignant condition to esophageal adenocarcinoma involving metaplasia of the esophageal epithelium. Since BE was first identified and described, it has been closely associated with hiatal hernia. The strength of the relationship has never been quantified, nor has the association, adjusted for confounders such as obesity and reflux, been examined. Male gender, obesity and reflux are well recognized risk factors for BE, however it is less certain what role environmental factors such as cigarette smoking play in the development of the condition. The association of BE with colonic tumors has also been speculated on but not clearly established. The aim of this thesis was to further explore the epidemiology of BE, specifically the relationship between BE and hiatal hernia, cigarette smoking and colonic tumors, through meta-analyses. Methods Three meta-analyses and systematic reviews were conducted, quantifying the relationship between BE and hiatal hernia, cigarette smoking and colonic tumors, respectively. Four electronic databases (Medline, PubMed, Embase, and Current Contents Connect) were searched for observational studies of BE patients. Pooled odds ratios (ORs) and 95% confidence intervals (CIs) were calculated using a random effects model for the association BE with hiatal hernia, cigarette smoking and colonic tumors. Results A positive relationship was observed between BE and hiatal hernia, which remained even after adjusting for reflux. Cigarette smoking was associated with an increased risk of BE. This was reflected in subgroup analyses of ever-, current- and former-smokers. BE was also associated with colonic tumors. The relationship was observed with both benign adenomatous tumors as well as with colorectal cancer, though it was stronger for colorectal cancer. Conclusions The association between BE and hiatal hernia is stronger for long segment BE when compared with short segment BE, and it appears to be independent of reflux. BE patients are also more likely to have ever smoked cigarettes. BE is associated with colonic tumors, with the association being stronger with colorectal cancer than with benign lesions

Efficacy of confrontational counselling for smoking cessation in smokers with previously undiagnosed mild to moderate airflow limitation: study protocol of a randomized controlled trial

<p>Abstract</p> <p>Background</p> <p>The use of spirometry for early detection of chronic obstructive pulmonary disease (COPD) is still an issue of debate, particularly because of a lack of convincing evidence that spirometry has an added positive effect on smoking cessation. We hypothesise that early detection of COPD and confrontation with spirometry for smoking cessation may be effective when applying an approach we have termed "confrontational counselling"; a patient-centred approach which involves specific communication skills and elements of cognitive therapy. An important aspect is to confront the smoker with his/her airflow limitation during the counselling sessions. The primary objective of this study is to test the efficacy of confrontational counselling in comparison to regular health education and promotion for smoking cessation delivered by specialized respiratory nurses in current smokers with previously undiagnosed mild to moderate airflow limitation.</p> <p>Methods/Design</p> <p>The study design is a randomized controlled trial comparing confrontational counselling delivered by a respiratory nurse combined with nortriptyline for smoking cessation (experimental group), health education and promotion delivered by a respiratory nurse combined with nortriptyline for smoking cessation (control group 1), and "care as usual" delivered by the GP (control group 2). Early detection of smokers with mild to moderate airflow limitation is achieved by means of a telephone interview in combination with spirometry. Due to a comparable baseline risk of airflow limitation and motivation to quit smoking, and because of the standardization of number, duration, and scheduling of counselling sessions between the experimental group and control group 1, the study enables to assess the "net" effect of confrontational counselling. The study has been ethically approved and registered.</p> <p>Discussion</p> <p>Ethical as well as methodological considerations of the study are discussed in this protocol. A significant and relevant effect of confrontational counselling would provide an argument in favour of early detection of current smokers with airflow limitation. Successful treatment of tobacco dependence in respiratory patients requires repeated intensive interventions. The results of this study may also show that respiratory nurses are able to deliver this treatment and that intensive smoking cessation counselling is more feasible.</p> <p>Trial registration:</p> <p>Netherlands Trial Register (ISRCTN 64481813).</p

The impact of smoke-free legislation on fetal, infant and child health: a systematic review and meta-analysis protocol

INTRODUCTION: Second-hand smoke (SHS) exposure is estimated to kill 600 000 people worldwide annually. The WHO recommends that smoke-free indoor public environments are enforced through national legislation. Such regulations have been shown to reduce SHS exposure and, consequently, respiratory and cardiovascular morbidity. Evidence of particular health benefit in children is now emerging, including reductions in low birthweight deliveries, preterm birth and asthma exacerbations. We aim to comprehensively assess the impact of smoke-free legislation on fetal, infant and childhood outcomes. This can inform further development and implementation of global policy and strategies to reduce early life SHS exposure. METHODS: Two authors will search online databases (1975–present; no language restrictions) of published and unpublished/in-progress studies, and references and citations to articles of interest. We will consult experts in the field to identify additional studies. Studies should describe associations between comprehensive or partial smoking bans in public places and health outcomes among children (0–12 years): stillbirth, preterm birth, low birth weight, small for gestational age, perinatal mortality, congenital anomalies, bronchopulmonary dysplasia, upper and lower respiratory infections and wheezing disorders including asthma. The Cochrane Effectiveness Practice and Organisational Care (EPOC)-defined study designs are eligible. Study quality will be assessed using the Cochrane 7-domain-based evaluation for randomised and clinical trials, and EPOC criteria for quasiexperimental studies. Data will be extracted by two reviewers and presented in tabular and narrative form. Meta-analysis will be undertaken using random-effects models, and generic inverse variance analysis for adjusted effect estimates. We will report sensitivity analyses according to study quality and design characteristics, and subgroup analyses according to coverage of ban, age group and parental/maternal smoking status. Publication bias will be assessed. ETHICS AND DISSEMINATION: Ethics assessment is not required. RESULTS: Will be presented in one manuscript. The protocol is registered with PROSPERO, registration number CRD42013003522

Citizenship Status and Pressure Group Action

This thesis investigates the intersection between citizenship status and pressure group action. It asks a two-pronged question. First, does variation in citizenship status (to be citizen or noncitizen) produce variation in pressure group action? Second, where there is variation, how is it that citizenship status matters; where there is no variation, how is it that citizenship status (a decidedly political status) does not matter? In response to this two-part question, a two-part theoretical framework has been developed. To answer the question of whether citizenship status matters, an interactive model of action has been developed. This provides a common measure through which similarities and differences in action-paths between citizen and non-citizen pressure groups can be uncovered. It is found that citizenship status does have an effect on pressure group action, notably in a pressure group’s interaction with a) their constituency; b) potential allies; c) other-state political institutions; and d) other-state media. To answer the question of how citizenship matters and does not matter, the idea of the capability mechanism has been developed. This asserts that variation in citizenship status - understood through either a rights or identity framework - produces, reduces, or removes capabilities. This, in turn, shapes action. This model is also used to explain similarities. Both the empirical findings and the theoretical frameworks developed within this thesis are useful for further analysis of the significance of citizen or non-citizen status on one’s relationship to political systems

Knowledge, attitudes and preferences regarding genetic testing for smoking cessation. A cross-sectional survey among Dutch smokers

Objectives Recent research strongly suggests that genetic variation influences smokers' ability to stop. Therefore, the use of (pharmaco) genetic testing may increase cessation rates. This study aims to assess the intention of smokers concerning undergoing genetic testing for smoking cessation and their knowledge, attitudes and preferences about this subject. Design Online cross-sectional survey. Setting Database internet research company of which every inhabitant of the Netherlands of '12 years with an email address and capable of understanding Dutch can become a member. Participants 587 of 711 Dutch smokers aged '18 years, daily smokers for '5 years and smoke on average '10 cigarettes/day (response rate=83%). Primary and secondary outcome measures Smokers' knowledge, attitudes and preferences and their intention to undergo genetic testing for smoking cessation. Results Knowledge on the influence of genetic factors in smoking addiction and cessation was found to be low. Smokers underestimated their chances of having a genetic predisposition and the influence of this on smoking cessation. Participants perceived few disadvantages, some advantages and showed moderate self-efficacy towards undergoing a genetic test and dealing with the results. Smokers were mildly interested in receiving information and participating in genetic testing, especially when offered by their general practitioner (GP). Conclusions For successful implementation of genetic testing for smoking in general practice, several issues should be addressed, such as the knowledge on smoking cessation, genetics and genetic testing (including advantages and disadvantages) and the influence of genetics on smoking addiction and cessation. Furthermore, smokers allocate their GPs a crucial role in the provision of information and the delivery of a genetic test for smoking; however, it is unclear whether GPs will be able and willing to take on this role

Bibliography

Regular use of beta2-agonists might result in increased bronchial hyper-responsiveness (BHR) and decreased forced expiratory volume in 1 sec (FEV1). It has been suggested that these possible detrimental effects are not a real deterioration of the disease, but that it might be only a transient (rebound) effect shortly after discontinuing this regular use. Moreover, these effects are thought to occur especially during short-acting and not during long-acting beta2-agonists use. The aim of this study was to invest gate whether a rebound effect (a pharmacological deterioration effect diminishing after several hours) in FEV1 and PC20 (concentration of histamine causing a 20% fall in FEV1 with regard to baseline) occurred after cessation of regular use of beta2-agonists, and whether this occurred both after short-acting and long-acting beta2-agonists. Allergic asthmatic patients (n = 134) were randomly allocated to the use of a short-acting (salbutamol), a long-acting beta2-agonist (formoterol) or placebo for 12 weeks (double-blind, double-dummy). No other asthma medication was allowed, including inhaled corticosteroids. At the start and every 4 weeks later FEV and PC20 were measured, each time at least 12 h after the last doses of study medication, which is in the possible rebound period. To investigate whether a (transient) rebound effect occurred, parameters were additionally measured at least 72 h later after discontinuation of the study medication. After 12 weeks of short-acting beta2-agonist use, a drop was seen in FEV1 from 85.6 (+/- 2.21)% predicted to 78.8 (+/- 2.9)% predicted, measured 15 h (median) after the last doses of medication. This was significantly different compared to placebo. When measured 168 h (median) later FEV1 recovered to 85.5 (+/- 2.4)% predicted, comparable to baseline. PC20 decreased with -1.17 (+/- 0.44) doubling dose after 12 weeks of short-acting beta2-agonist use, measured 15 h after the last doses of medication, which was significantly different compared to placebo. However, 168 h later PC20 recovered slightly with +0.55 (+/- 0.34) doubling dose, but this value was still lower compared to placebo. In contrast, during long-acting beta2-agonist and placebo use no significant changes were seen. In conclusion, the use of short-acting beta2-agonists resulted in a transient (rebound) effect in FEV while the effects on PC20 may point to a real deterioration of the disease. Long-acting beta2-agonist and placebo use showed no changes.We conclude that a mono-therapy of short-acting and not of long-acting beta2-agonists might have deleterious effects in asthma