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As posthumous data use policy within the broader scope of navigating postmortem data privacy is a procedurally complex landscape, our study addresses this by exploring patterns in individuals’ willingness to donate data with health researchers after death and developing practical recommendations.
Methods:
An electronic survey was conducted in April 2021 among adults (≥18 years of age) registered in ResearchMatch (www.researchmatch.org), a national health research registry. Descriptive statistics were used to observe trends in, and multinomial logistic regression analyses were conducted at a 95% confidence interval to determine the association between, willingness to donate some, all, or no data after death with researchers based on the participants’ demographics (education level, age range, duration of using online medical websites, and annual frequency of getting ill).
Results:
Of 399 responses, most participants were willing to donate health data (electronic medical record data [67%], prescription history data [63%], genetic data [54%], and fitness tracker data [53%]) after death. Among 397 respondents, we identified that individuals were more likely to donate some data after death (vs. no data) if they had longer duration of using online medical websites (adjusted relative risk ratio = 1.22, p= 0.04, 95% CI: 1.01 to 1.48). No additional significant findings were observed between willingness to donate all, some, or none of their data after death and other demographic factors.
Conclusions:
Engaging patients in online medical websites may be one potential mechanism to encourage or inspire individuals to participate in posthumous data donation for health research purposes.
Clay mineral associations in saprolite of two andesites from the Cascade Range of northeastern California were determined. Sesquioxidic allophane with a high CEC delta value dominates the clay fraction of the least weathered saprolite in each series (47% and 37% in hypersthene andesite and olivine andesite saprolites, respectively). With further weathering, the content of amorphous clay remains high (over 30% in all cases) but the CEC delta value of the clay drops markedly. The amorphous material in the more weathered saprolite has the properties of halloysitic allophane. Halloysite, present in all saprolites, is highest in concentration (over 30%) in the more strongly weathered members of each of the saprolite series. Formation of sesquioxidic allophane during early stages of weathering and its transformation to halloysitic allophane and halloysite during later stages of weathering are supported by X-ray diffraction, electron microscopic, DTA, elemental analysis, and CEC delta value data.
Understanding the views of those working along the value chain reliant on livestock is an important step in supporting the transition towards more sustainable farming systems. We recruited 31 delegates attending the Pig Welfare Symposium held in the United States to participate in one of six focus group discussions on the future of pig farming. Each of these six group discussions was subjected to a thematic analysis that identified four themes: (1) technical changes on the farm; (2) farm and industry culture; (3) the farm-public interface; and (4) sustainability. The results of this study illustrate the complexity and diversity of views of those working along the associated value chain within the swine industry. Participants spent the majority of their time discussing current challenges, including technical challenges on the farm and public perception of pig farms. Participants were more hesitant to discuss future issues, but did engage on the broader issue of sustainability, focusing upon economic and environmental aspects.
Real-world data privacy is a complex yet underexplored topic. To date, few studies have reported adult perspectives around real-world data privacy and willingness to share real-world data with researchers.
Methods:
Relevant survey items were identified in the literature, adapted and pilot tested among a small convenience sample, and finalized for distribution. The survey was distributed electronically in April 2021 among adults (≥18 years of age) registered in ResearchMatch (www.researchmatch.org). Microsoft Excel was used to assess descriptive statistics across demographical items and four privacy-related items.
Results:
Of 402 completed responses received, half of respondents (∼50%) expressed willingness to share their prescription history data and music streaming data with researchers and unwillingness to share real-world data from several other sources. Most (53–93%) of participants expressed concern with five statements reflecting the sharing and use of their digital data online. Most participants (71–75%) agreed with four statements focused on individual measures taken to protect their personal privacy and disagreed (77–85%) with two statements centered on not being concerned about sharing or 3rd party access to their personal data online.
Conclusions:
Our observations indicate an important yet unmet need to further explore and address real-world data privacy concerns among US adults engaging as prospective research participants.
Over the last 25 years, radiowave detection of neutrino-generated signals, using cold polar ice as the neutrino target, has emerged as perhaps the most promising technique for detection of extragalactic ultra-high energy neutrinos (corresponding to neutrino energies in excess of 0.01 Joules, or 1017 electron volts). During the summer of 2021 and in tandem with the initial deployment of the Radio Neutrino Observatory in Greenland (RNO-G), we conducted radioglaciological measurements at Summit Station, Greenland to refine our understanding of the ice target. We report the result of one such measurement, the radio-frequency electric field attenuation length $L_\alpha$. We find an approximately linear dependence of $L_\alpha$ on frequency with the best fit of the average field attenuation for the upper 1500 m of ice: $\langle L_\alpha \rangle = ( ( 1154 \pm 121) - ( 0.81 \pm 0.14) \, ( \nu /{\rm MHz}) ) \,{\rm m}$ for frequencies ν ∈ [145 − 350] MHz.
The coronavirus disease 2019 (COVID-19) pandemic continues to present unique public health challenges both within the United States and across the globe. Institutions of higher learning are tasked with preventing and responding to COVID-19 on campus while also considering implications for the surrounding communities. The process of re-opening campus, whether at full or partial capacity, has tasked these institutions with overcoming complex challenges associated with balancing the resumption of campus operations while simultaneously protecting university affiliates and surrounding community members from COVID-19 through robust surveillance, contact tracing, and testing efforts. Here, we provide a concise outline related to the development and implementation of the comprehensive and sustainable COVID-19 surveillance program at the University of Florida. We also critically discuss the successes and pitfalls of this program while also providing recommendations for the development of similar programs in the future.
To investigate the association of prenatal alcohol exposure (PAE) and early neurodevelopment in the first 2 years of life, adjusting for maternal socio-demographic and psychosocial factors, in the Drakenstein Child Health Study (DCHS), a South African birth cohort study.
Methods:
The DCHS comprises a population-based birth cohort of 1143 children, of which a subsample completed the Bayley Scales of Infant Development-III (BSID-III) at 6 (n = 260) and 24 months of age (n = 734). A subset of alcohol-exposed and -unexposed children was included in this analysis at age 6 (n = 52 exposed; n = 104 unexposed) and 24 months (n = 92 exposed; n = 184 unexposed). Multiple hierarchical regression was used to explore the associations of PAE with motor and language development.
Results:
PAE was significantly associated with decreased gross motor [odds ratio (OR) = 0.16, 95% confidence interval (CI) = 0.06–0.44, p = 0.001] or fine motor (OR = 0.16, 95% CI = 0.06–0.46, p = 0.001) functioning after adjusting for maternal socio-demographic and psychosocial factors at 6 months of age only. No significant effects were found in either receptive or expressive communication and cognitive outcomes at either time points.
Conclusion:
PAE has potentially important consequences for motor development in the first 2 years of life, a period during which the most rapid growth and maturation occur. These findings highlight the importance of identifying high-risk families in order to provide preventive interventions, particularly in antenatal clinics and early intervention services.
Results of helicopter-borne electromagnetic measurements of total (ice plus Snow) Sea-ice thickness performed in May 2004 and 2005 in the Lincoln Sea and adjacent Arctic Ocean up to 86˚N are presented. Thickness distributions South of 84˚N are dominated by multi-year ice with modal thicknesses of 3.9 m in 2004 and 4.2 m in 2005 (mean thicknesses 4.67 and 5.18 m, respectively). Modal and mean Snow thickness on multi-year ice amounted to 0.18 and 0.30 m in 2004, and 0.28 and 0.35 m in 2005. There are also considerable amounts of 0.9–2.2m thick first-year ice (modal thickness), mostly representing ice formed in the recurring, refrozen Lincoln Polynya. Results are in good agreement with ground-based electromagnetic thickness measurements and with ice types demarcated in Satellite Synthetic aperture radar imagery. Four drifting buoys deployed in 2004 between 86˚N and 84.5˚N Show a Similar pattern of a mean Southward drift of the ice pack of 83 ±18km between May 2004 and April 2005, towards the coast of Ellesmere Island and Nares Strait. The resulting area decrease of 26% between the buoys and the coast is larger than the observed thickness increase South of 84˚ N. This points to the importance of Shear in a narrow band along the coast, and of ice export through Nares Strait in removing ice from the Study region.
To determine whether exposure to child-targeted fast-food (FF) television (TV) advertising is associated with children’s FF intake in a non-experimental setting.
Design
Cross-sectional survey conducted April–December 2013. Parents reported their pre-school child’s TV viewing time, channels watched and past-week FF consumption. Responses were combined with a list of FF commercials (ads) aired on children’s TV channels during the same period to calculate children’s exposure to child-targeted TV ads for the following chain FF restaurants: McDonald’s, Subway and Wendy’s (MSW).
Setting
Paediatric and Women, Infants, and Children (WIC) clinics in New Hampshire, USA.
Subjects
Parents (n 548) with a child of pre-school age.
Results
Children’s mean age was 4·4 years; 43·2 % ate MSW in the past week. Among the 40·8 % exposed to MSW ads, 23·3 % had low, 34·2 % moderate and 42·5 % high exposure. McDonald’s accounted for over 70 % of children’s MSW ad exposure and consumption. Children’s MSW consumption was significantly associated with their ad exposure, but not overall TV viewing time. After adjusting for demographics, socio-economic status and other screen time, moderate MSW ad exposure was associated with a 31 % (95 % CI 1·12, 1·53) increase and high MSW ad exposure with a 26 % (95 % CI 1·13, 1·41) increase in the likelihood of consuming MSW in the past week. Further adjustment for parent FF consumption did not change the findings substantially.
Conclusions
Exposure to child-targeted FF TV advertising is positively associated with FF consumption among children of pre-school age, highlighting the vulnerability of young children to persuasive advertising and supporting recommendations to limit child-directed FF marketing.
Studies of the pedogenic iron oxyhydroxides in suites of latest Holocene to middle Pleistocene soils formed on fluvial deposits of the transverse ranges, southern California, indicate that the content and composition of iron oxyhydroxide change in a systematic manner. Analysis of total secondary free iron oxides (dithionite extractable, Fe2O3d) and ferrihydrite (oxalate extractable, Fe2O3o) shows that (1) a single-logarithmic model (Y = a + b log X) or double logarithmic model (log Y = a + b log X), where Y is the total mass of pedogenic Fe oxides (g/cm2-soil column) and X is soil age, describes the rate of increase in Fe2O3d with time; (2) the Fe2O3d content correlates linearly with soil reddening and clay content; (3) the Fe2O3oFe2O3d ratio, which indicates the degree of Fe oxide crystallinity, is moderately high to very high (0.22–0.58) in middle Holocene to latest Pleistocene soils and progressively decreases to less than 0.10 in older soils; (4) the value of the Fe2O3oFe2O3d ratio also appears to be infuenced by climate; and (5) temporal changes in Fe oxide content and mineralogy are accompanied by related, systematic changes in clay mineralogy and organic matter content. These relationships are attributed to a soil environment that must initially favor ferrihydrite precipitation and/or organic matter-Fe complexation. Subsequent transformation to hematite causes increasingly intense reddening and a concomitant decrease in the Fe2O3oFe2O3d ratio. The results demonstrate that iron oxide analysis is useful for numerical age studies of noncalcic soils and shows potential as an indicator of paleoclimates.
Previously, the single nucleotide polymorphism in alcohol dehydrogenase (ADH1C c.-64T>C) was shown to have an association with intramuscular fat (IMF) in the longissimus thoracis (LT) muscle when vitamin A was limited in finishing rations of beef steers. The purpose of this study was to determine the optimum vitamin A supplementation level, in combination with ADH1C genotype, to increase IMF of the LT muscle. In total, 45 TT genotype, 45 CT and 27 CC Black Angus crossbred steers were backgrounded on a commercial ration containing 3360 IU vitamin A/kg dry matter (DM). During finishing, the steers were randomly assigned to one of three vitamin A treatments at 25%, 50% and 75% of the National Research Council recommendation of 2200 IU/kg DM. Treatments were administered via an oral bolus. Carcass quality was evaluated and a sample from the LT muscle was collected for analysis of IMF. A treatment×genotype interaction (P=0.04) was observed for IMF; TT steers on the 75% treatment had higher IMF relative to CT and CC steers on the same treatment. Western blot analysis showed that TT steers had higher (P=0.02) ADH1C protein expression in hepatic tissue. Previously, TT steers exhibited increased IMF when fed limited vitamin A. In the current study, the lack of variation in IMF between treatments and genotypes at the lower vitamin A treatment levels was likely due to the majority of the steers grading Canada AAA (USDA Choice). However, the western blot data supports that TT steers are expected to have higher IMF deposition, due to an increased production of ADH1C. The interaction between ADH1C genotype and vitamin A supplementation level has the potential for use in marker-assisted management programs to target niche markets based on increased marbling.
Background: Neuropsychological studies of the pattern and extent of cognitive impairment in HIV-infected patients have mostly used deviations from control values and/or cut-off scores as criteria for classification of dementia. There is, however, no agreement as to how to define impairment, and classification is imprecise. Method: The current study used a dementia classification matrix, developed with a step-wise linear discriminant analysis of neuropsychological data from patients with primary neurodegenerative dementias, to classify symptomatic HIV patients as demented or non-demented, and further to differentiate cortical and subcortical dementia patterns. Thirty-two male and 2 female patients (mean age 39 ± 2) with symptomatic HIV disease (mean absolute CD4 count 195 ±41) participated in the study. Results: Thirty-five per cent of patients were classified as demented. Of these, 83% showed a subcortical pattern and 17% a cortical profile of deficits. Significant differences between patients classified as subcortically demented and those categorized as normal on neuropsychological measures associated with subcortical integrity further validated the classification. Measures of psychiatric status between subgroups were similar. Conclusion: Since certain treatments may delay or reverse cognitive deficits, the use of an objective classification method based on discriminant analysis may help to identify patients who may benefit from therapy.
Despite the great capacity for the pediatric brain to recover from stroke, the morbidity and mortality in children who harbor an arteriovenous malformation (AVM) remains high. This study examines the clinical data and management experience with 132 patients with brain AVM from 1949 to 1989. Although the high tendency for a childhood AVM to present with hemorrhage (79%) remained constant for the forty year study period, the associated morbidity and mortality of hemorrhage changed. The mortality rate from hemorrhage for the entire series was 25%, which was reduced from 39% to 16% after the introduction of computed tomography. The mortality from AVM hemorrhage since 1975 was dependent on location; 8 of 14 patients (57%) with a cerebellar AVM died from hemorrhage while only 2 of 44 patients (4.5%) with a cerebral hemisphere AVM died (p < 0.0001). Sixteen children (12%) presented with a chronic seizure disorder. Surgical excision of the malformation resulted in complete seizure control off anti-convulsant medication in 73% of patients. Although 21% of patients were treated non-operatively (many with terminal poor-grade hemorrhage), 79% had a surgical procedure with total AVM excision achieved in 70 patients (53.1%). Complete AVM resection was followed by a normal neurological outcome in 47 children (67%). Most partial excisions (n=9) and clipping of feeding arteries (n=7) were performed in the early years of this study, and did not provide protection from rehe-morrhage. Although conservative management has been advocated for selected non-hemorrhagic AVMs, we conclude that essentially all children with an AVM should be treated in order to eliminate the risk of hemorrhage. Long-term conservative management in pediatric patients is warranted only in patients with large AVMs not amenable to treatment using current multimodality techniques.
Vitamin D deficiency has been implicated in the aetiology of infectious diseases and metabolic syndrome. These diseases are prevalent in the African and Asian-Indian populations of South Africa; however, there is limited data on 25-hydroxyvitamin D (25(OH)D) concentrations in these populations. The aim of the present study was to assess the vitamin D status and its predictors in healthy adults in Johannesburg. We assessed the vitamin D status of 730 adult African and Asian-Indian subjects residing in Johannesburg. The contributions of sun exposure, season, dietary intake of Ca and vitamin D, total body fat and body fat distribution to 25(OH)D concentrations were assessed. The concentrations of 25(OH)D were measured by HPLC. The contribution of 25(OH)D3 to total 25(OH)D concentrations was assessed. The mean age of the subjects was 42·6 (sd 13·1) years (range: 18–65). Concentrations of 25(OH)D < 30 nmol/l were found in 28·6 % of the Asian-Indian subjects in comparison with 5·1 % of the African subjects (P< 0·0001). Parathyroid hormone (PTH) concentrations were negatively associated with 25(OH)D concentrations, while season and sun exposure were positive predictors explaining 16 % of the variance in 25(OH)D concentrations (P< 0·0001) in the African subjects. In the Asian-Indian subjects, PTH concentrations were negatively associated with 25(OH)D concentrations, while male sex, season and Ca supplementation were positive predictors and explained 17 % of the variance in 25(OH)D concentrations (P< 0·0001). In the multivariate regression analysis, neither total body fat nor body fat distribution was predictive of 25(OH)D concentrations in either group. In conclusion, factors such as sun exposure, dietary supplement use and ethnicity are important determinants of plasma 25(OH)D concentrations.
To explore the perceptions of educators from the Western Cape Province about the feasibility of implementing South African food-based dietary guidelines (FBDG) in the national curriculum of primary schools.
Design
Combined quantitative and qualitative methods. We report on the quantitative component.
Setting
Twelve public primary schools of different socio-economic status in three education districts of the Western Cape: Metro Central, Metro East and Cape Winelands.
Subjects
Educators (n 256) participated in the self-completed questionnaire survey.
Results
Educators assessed that FBDG were appropriate to South African schoolchildren (94%), could be used as an education tool (97%) and fill gaps in the current curriculum about healthy dietary habits (91%). Besides Life Orientation, FBDG could be taught in other learning areas from grades 3 to 7 (9–13 years old). Important barriers to implementing FBDG in the curriculum were educators’ workload (61%), insufficient time (46%), learners’ disadvantaged background (43%) and educators’ lack of knowledge (33%). Other approaches to teach children about FBDG included linking these to the National School Nutrition Programme (82%), school tuck shops (79%), parent meetings (75%), school nutrition policy (73%) and school assembly (57%). Educators in high-income schools perceived that learners’ lifestyle was significantly worse (P < 0·001) and that tuck shops and the school assembly were the best means to teach pupils about FBDG (P < 0·001 and P < 0·05).
Conclusions
Implementing FBDG in the national school curriculum is seen as important together with optimizing the school physical environment. Key factors required for successful implementation in the curriculum are sufficient educational materials, adequate time allocation and appropriate educator training.
Background: Adolescents are prone to sleep problems that have unique developmental aspects and contribute to physical, emotional, and behavioural problems. Aims: This study evaluated an individualized, multicomponent intervention that considered developmental factors, and promoted age-appropriate autonomy in three adolescent females with disrupted sleep. Method: Adolescents recorded sleep data on daily logs. A nonconcurrent multiple baseline design was used to evaluate a cognitive-behavioural intervention including sleep hygiene training, bedtime routine development, cognitive restructuring, relaxation training, stimulus control, sleep restriction, bedtime fading, and problem-solving, along with clinically indicated individualization. Results: Outcomes demonstrated clinically meaningful improvements and decreased variability in sleep parameters following intervention. Each participant's sleep log data indicated improvement in, or maintenance of, adequate total sleep time (TST), decreased sleep onset latency (SOL), improved sleep efficiency (SE), improvement in time of sleep onset, and decreased or continued low frequency of night awakenings (NA). Anecdotally, adolescents and parents reported improvement in daytime functioning, coping, and sense of wellbeing. Conclusions: These cases highlight the potential for cognitive-behavioural interventions to facilitate healthy sleep in adolescents with challenging sleep problems.