Sample, data use and protection in biobanking in Europe: legal issues

The sharing of samples and data stored in biobanks for research has implications for donor privacy, but also raises questions on the regulation of research within Europe. Many legal documents and principles within Europe, with a direct impact on biobanking, have not been developed specifically to support this activity. Moreover, while some new regulations have been set up at national level, there are many variations in the definitions, scope and purpose of these legal instruments. This has resulted in unnecessary hurdles for genome-based research, particularly if samples are shared across national borders. The question is also raised on whether new, specific legislative and governance frameworks designed for biobanking are needed, or whether it is sufficient to modify current general law and to develop specific guidelines, or to accommodate issues raised by biobanking in the current regulation. A workshop with experts from academia and industry, lawyers, national data protection authorities, representatives from the European Commission and the European Data Protection Supervisor was held to review the existing legal bottlenecks and future needs of biobanking, with special regard to the collection, exchange and linkage of samples and data. This report presents highlights of the presentations and discussions from the workshop held in Sevilla, Spain, in March 2007 and the conclusions that followed. The workshop focused on the internal linkage of data and samples stored in a biobank, and the external linkage of biobanks with secondary information resources, such as cancer registries.     

Accuracy of the Hammersmith infant neurological examination for the early detection of neurological changes in infants exposed to Zika virus: A case-cohort study

The Hammersmith infant neurological examination (HINE) is a highly predictive tool for the easy and low-cost detection of cerebral palsy. Between 2015 and 2016, the rapid spread of the Zika virus (ZIKV) in Brazil was responsible for an increase in microcephaly cases. This study aimed to verify the accuracy of the HINE for the early detection of neurological problems in Brazilian babies exposed to ZIKV.This was a cross sectional case-control study of children exposed to ZIKV. This study was part of the Jundiaí ZIKV Cohort. Of a total sample of 782 children, 98 were evaluated (26 in the exposed group and 63 in the control group). We included late preterm infants and term infants who were exposed to the ZIKV and were participants in the ZIKV Cohort study. Student''s t-test and stepwise multivariate logistic regression were used to compare groups.Of the 26 items evaluated in the five scored categories of the HINE (cranial nerve function, posture, movements, tone, reflexes, and reactions), only the difference in ankle dorsiflexion between the exposed and the control groups was statistically significant. However, some items showed a significant trend in relation to the control group.Our results demonstrated the importance of early neurological assessment of infants exposed to ZIKV, even in those without a microcephaly diagnosis.     

Exceptionally High CO2 Adsorption at 273 K by Microporous Carbons from Phenolic Aerogels: The Role of Heteroatoms in Comparison with Carbons from Polybenzoxazine and Other Organic Aerogels

Phenolic aerogels containing oxygen and other polymeric aerogels containing both oxygen and nitrogen (polybenzoxazine and a polyamide‐polyimide‐polyurea co‐polymer) are converted to carbon aerogels (800 °C/Ar), and are etched with CO₂ (1000 °C). Etching opens closed pores and increases micropore volumes and size. Heteroatoms are retained in the etched samples. All carbon aerogels are evaluated as CO₂ absorbers in terms of their capacity and selectivity toward CH₄, H₂, and N₂. CO₂ adsorption capacity is linked to microporosity. In most cases, monolayer coverage of micropore walls is enough to explain CO₂ uptake quantitatively. The interaction of CO₂ with micropore walls is evaluated via isosteric heats of adsorption, and is stronger with carbons containing only oxygen heteroatoms. The adsorption capacity of those carbons (5–6 mmol g^?1) is on par with the best carbon and polymeric CO₂ adsorbers known in the literature, with one exception however: etched carbon aerogels from low‐density resorcinol‐formaldehyde aerogels show a very high CO₂ uptake (14.8 ± 3.9 mmol g^?1 at 273 K, 1 bar) attributed to a pore‐filling process that proceeds beyond monolayer coverage, whereas surface phenoxides engage in a thermally neutral carbonate forming reaction (surface‐O^– + CO₂ → surface‐O–(CO)–O^–) that continues until micropores are filled.     

温阳泻肺利水法联合穴位贴敷治疗心衰并胸腔积液临床疗效研究

目的 探讨温阳泻肺利水法联合穴位贴敷治疗心衰并胸腔积液的临床疗效.方法 将2019年1月至2020年1月前来我院就诊心衰并胸腔积液的60例患者作为研究对象,用随机数据表法分为两组.对照组30例予以常规西药治疗,观察组30例在此基础上予以温阳泻肺利水法合穴位敷贴.比较两组患者的临床疗效,心率(HR)、脉搏血氧饱和度(SpO2)、血浆脑利钠肽(BNP)、6min步行试验及心脏左室射血分数(EF).结果 治疗后两组患者HR、BNP值下降,SpO2升高,观察组各项指标优于对照组,差异有统计学意义(P<0.05);治疗后两组6min步行试验及EF水平均有改善,观察组上述指标优于对照组,差异有统计学意义(P<0.05);观察组总有效率为86.7％,对照组为73.3％,差异有统计学意义(P<0.05).结论 温阳泻肺利水法联合穴位贴敷治疗心衰并胸腔积液的临床疗效理想,有利于抑制心衰,减少胸腔积液,具有临床推广价值.     

The right to mourn in dementia: To tell or not to tell when someone dies in dementia day care

People with dementia (PwD) attending dementia day care often experience the death of others. Little research exists regarding whether PwD should be informed of the death, and if so, how? In this qualitative research, the authors explored, through semistructured interviews, the beliefs and practices of 52 staff members of adult day centers for PwD about these issues. Themes that emerged are that many staff members feel their clients have emotional capacity to mourn, despite their cognitive impairments. There are many different ways to tell PwD about the death of others. Each case should be judged individually. Eighty percent of staff feels sad when a group member dies and 92% desires more training on how to enable their clients to grieve. Research is needed on mourning and PwD, staff training, and ways to help staff with the burden of their own grieving. These methods may improve quality of care and decrease staff burnout.     

Sevelamer hydrochloride versus aluminum hydroxide: effect on serum phosphorus and lipids in CAPD patients.

BACKGROUND: Dietary phosphorus restriction, oral administration of phosphorus binders, and dialysis are the main strategies to control hyperphosphatemia in patients with stage 5 chronic kidney disease. Aluminum hydroxide (AH) and calcium carbonate, the most commonly used phosphorus binders, have serious disadvantages, such as aluminum toxicity and hypercalcemia. Sevelamer hydrochloride (SH) is a relatively new nonabsorbed calcium- and aluminum-free phosphorus binder. The present study was designed to evaluate the efficacy of SH in the control of hyperphosphatemia and its effect, compared to AH, on serum lipid parameters in patients on continuous ambulatory peritoneal dialysis (CAPD). METHODS: 30 stable patients on CAPD were included in an open-label, randomized crossover study. After a 2-week phosphorus binder washout period, 15 patients (group I) were administered SH for 8 weeks and in the remaining patients (group II), AH was introduced (phase A). After a new 2-week washout period, patients crossed over to the alternate agent for another 8 weeks (phase B). RESULTS: There were similar reductions in serum phosphorus levels over the course of the study with both agents: by 1.18 +/- 0.07 mg/dL (0.38 +/- 0.03 mmol/L) with SH and by 1.25 +/- 0.15 mg/dL (0.40 +/- 0.05 mmol/L) with AH in phase A (p = NS), and by 1.35 +/- 0.25 mg/dL (0.43 +/- 0.08 mmol/L) with AH and by 1.23 +/- 0.80 mg/dL (0.39 +/- 0.25 mmol/L) with SH in phase B (p = NS). Moreover, SH administration was associated with a 10.5% +/- 9.4% and a 20.1% +/- 6.8% fall in total cholesterol (p < 0.05) and low-density Lipoprotein cholesterol (p < 0.001) in phase A, and 11.9% +/- 7.2% (p < 0.05) and 21.5% +/- 2.4% (p < 0.001), respectively, in phase B. In both phases of the study, AH administration was not followed by a significant change in serum lipid parameters. CONCLUSION: Sevelamer hydrochloride is a well-tolerated alternative to calcium- or aluminum-containing phosphorus binder in the control of serum phosphorus in CAPD patients. Furthermore, SH improves the lipid profile in these patients.     

Vascular access for haemodialysis in extreme situations: surgically placed inferior vena cava catheter

Sir, As the dialysis patient population increases, the so-called‘terminal access problems’ become more common. Herewe report an extreme vascular access problem, which was successfullysolved with the surgical placement of an inferior vena cavacatheter. A 64-year-old female patient with longstanding end-stage renaldisease developed a huge haematoma of the left groin and thighafter a haemodialysis session via a femoro-femoral loop vascularaccess graft, which subsequently thrombosed.     

Behavioral and antioxidant activity of a tosylbenz[g]indolamine derivative. A proposed better profile for a potential antipsychotic agent

Background  

Tardive dyskinesia (TD) is a major limitation of older antipsychotics. Newer antipsychotics have various other side effects such as weight gain, hyperglycemia, etc. In a previous study we have shown that an indolamine molecule expresses a moderate binding affinity at the dopamine D₂ and serotonin 5-HT_1A receptors in in vitro competition binding assays. In the present work, we tested its p-toluenesulfonyl derivative (TPBIA) for behavioral effects in rats, related to interactions with central dopamine receptors and its antioxidant activity.