What does engagement mean to participants in longitudinal cohort studies?:A qualitative study

Abstract Background Engagement is important within cohort studies for a number of reasons. It is argued that engaging participants within the studies they are involved in may promote their recruitment and retention within the studies. Participant input can also improve study designs, make them more acceptable for uptake by participants and aid in contextualising research communication to participants. Ultimately it is also argued that engagement needs to provide an avenue for participants to feedback to the cohort study and that this is an ethical imperative. This study sought to explore the participants’ experiences and thoughts of their engagement with their birth cohort study. Methods Participants were recruited from the Children of the 90s (CO90s) study. Qualitative semi-structured interviews were conducted with 42 participants. The interviews were transcribed verbatim, and uploaded onto Nvivo software. They were then analysed via thematic analysis with a constant comparison technique. Results Participants’ experiences of their engagement with CO90s were broadly based on three aspects: communication they received from CO90s, experiences of ethical conduct from CO90s and receiving rewards from CO90s. The communication received from CO90s, ranged from newsletters explaining study findings and future studies, to more personal forms like annual greeting cards posted to each participant. Ethical conduct from CO90s mainly involved participants understanding that CO90s would keep their information confidential, that it was only involved in ‘good’ ethical research and their expectation that CO90s would always prioritise participant welfare. Some of the gifts participants said they received at CO90s included toys, shopping vouchers, results from clinical tests, and time off from school to attend data collection (Focus) days. Participants also described a temporality in their engagement with CO90s and the subsequent trust they had developed for the cohort study. Conclusion The experiences of engagement described by participants were theorized as being based on reciprocity which was sometimes overt and other times more nuanced. We further provide empirical evidence of participants’ expectation for a reciprocal interaction with their cohort study while highlighting the trust that such an interaction fosters. Our study therefore provides key insights for other cohort studies on what participants value in their interactions with their cohort studies

International Data Sharing in Practice:New Technologies Meet Old Governance

The social structures that govern data/sample release aim to safeguard the confidentiality and privacy of cohort research participants (without whom there would be no data or samples) and enable the realization of societal benefit through optimizing the scientific use of those cohorts. Within collaborations involving multiple cohorts and biobanks, however, the local, national, and supranational institutional and legal guidelines for research (which produce a multiplicity of data access governance structures and guidelines) risk impeding the very science that is the raison d'etre of these consortia. We present an ethnographic study, which examined the epistemic and nonepistemic values driving decisions about data access and their consequences in the context of the pilot of an integrated approach to co-analysis of data. We demonstrate how the potential analytic flexibility offered by this approach was lost under contemporary data access governance. We identify three dominant values: protecting the research participant, protecting the study, and protecting the researcher. These values were both supported by and juxtaposed against a “public good” argument, and each was used as a rationale to both promote and inhibit sharing of data. While protection of the research participants was central to access permissions, decisions were also attentive to the desire of researchers to see their efforts in building population biobanks and cohorts realized in the form of scientific outputs. We conclude that systems for governing and enabling data access in large consortia need to (1) protect disclosure of research participant information or identity, (2) ensure the specific expectations of research participants are met, (3) embody systems of review that are transparent and not compromised by the specific interests of one particular group of stakeholders, and (4) facilitate data access procedures that are timely and efficient. Practical solutions are urgently needed. New approaches to data access governance should be trialed (and formally evaluated) with input from and discussion with stakeholders

Parallelization and optimization of genetic analyses in isolation by distance web service

<p>Abstract</p> <p>Background</p> <p>The Isolation by Distance Web Service (IBDWS) is a user-friendly web interface for analyzing patterns of isolation by distance in population genetic data. IBDWS enables researchers to perform a variety of statistical tests such as Mantel tests and reduced major axis regression (RMA), and returns vector based graphs. The more than 60 citations since 2005 confirm the popularity and utility of this website. Despite its usefulness, the data sets with over 65 populations can take hours or days to complete due to the computational intensity of the statistical tests. This is especially troublesome for web-based software analysis, since users tend to expect real-time results on the order of seconds, or at most, minutes. Moreover, as genetic data continue to increase and diversify, so does the demand for more processing power. In order to increase the speed and efficiency of IBDWS, we first determined which aspects of the code were most time consuming and whether they might be amenable to improvements by parallelization or algorithmic optimization.</p> <p>Results</p> <p>Runtime tests uncovered two areas of IBDWS that consumed significant amounts of time: randomizations within the Mantel test and the RMA calculations. We found that these sections of code could be restructured and parallelized to improve efficiency. The code was first optimized by combining two similar randomization routines, implementing a Fisher-Yates shuffling algorithm, and then parallelizing those routines. Tests of the parallelization and Fisher-Yates algorithmic improvements were performed on a variety of data sets ranging from 10 to 150 populations. All tested algorithms showed runtime reductions and a very close fit to the predicted speedups based on time-complexity calculations. In the case of 150 populations with 10,000 randomizations, data were analyzed 23 times faster.</p> <p>Conclusion</p> <p>Since the implementation of the new algorithms in late 2007, datasets have continued to increase substantially in size and many exceed the largest population sizes we used in our test sets. The fact that the website has continued to work well in "real-world" tests, and receives a considerable number of new citations provides the strongest testimony to the effectiveness of our improvements. However, we soon expect the need to upgrade the number of nodes in our cluster significantly as dataset sizes continue to expand. The parallel implementation can be found at <url>http://ibdws.sdsu.edu/</url>.</p

Novel use of field-portable-XRF for the direct analysis of trace elements in marine macroalgae.

Samples of dried marine macroalgae (Fucus serratus, Palmaria palmata and Ulva lactuca) have been analysed for trace elements by a novel, non-destructive approach involving a Niton field-portable-X-ray fluorescence (FP-XRF) spectrometer configured in a low density plastics mode with thickness correction. Detection limits for a 200-s counting time ranged from <5 μg g(-1) for As and Pb in F. serratus and As in P. palmata to several tens of μg g(-1) for Cd, Sb and Sn in all species tested. Arsenic, Cu, Pb and Zn were detected by the XRF in samples collected from a protected beach (n = 18) and in samples therefrom that had been exposed to additional aqueous elements in combination (n = 72) with concentrations returned (in μg g(-1)) ranging from 3.9 to 39.7 for As, 13.0 to 307 for Cu, 6.1 to 14.7 for Pb and 12.5 to 522 for Zn. Independent measurements of trace elements in the macroalgae by ICP-MS following nitric acid digestion revealed a direct and significant proportionality with concentrations returned by the XRF, with slopes of the XRF-ICP relationships (As = 1.0; Cu = 2.3; Pb = 2.4; Zn = 1.7) that can be used to calibrate the instrument for direct measurements. The approach shows potential for the in situ monitoring of macroalgae in coastal regions that is currently being investigated

Psychiatric profiles of mothers who take Ecstasy/MDMA during pregnancy: Reduced depression 1 year after giving birth and quitting Ecstasy

Background: The recreational drug MDMA (3,4-methylenedioxymethamphetamine) or ‘Ecstasy’ is associated with heightened psychiatric distress and feelings of depression. The Drugs and Infancy Study (DAISY) monitored the psychiatric symptom profiles of mothers who used Ecstasy/MDMA while pregnant, and followed them over the first year post-partum. Methods: We compared 28 young women whom took MDMA during their pregnancy with a polydrug control group of 68 women who took other psychoactive drugs while pregnant. The Brief Symptom Inventory (BSI) was completed for several periods: The first trimester of pregnancy; and 1, 4 and 12 months after childbirth. Recreational drug use was monitored at each time point. Results: During the first trimester of pregnancy, MDMA-using mothers reported higher depression scores than the polydrug controls. At 1 year after childbirth, their BSI depression scores were significantly lower, now closer to the control group values. At the same time point, their self-reported use of MDMA became nearly zero, in contrast to their continued use of Cannabis/marijuana, nicotine and alcohol. We found significant symptom reductions in those with BSI obsessive-compulsive and interpersonal sensitivity, following Ecstasy/MDMA cessation. Conclusions: The findings from this unique prospective study of young recreational drug-using mothers are consistent with previous reports of improved psychiatric health after quitting MDMA

X-ray Properties of the Weak Seyfert 1 Nucleus in NGC 4639

We obtained observations of NGC 4639 with ASCA in order to investigate its mildly active Seyfert 1 nucleus at hard X-ray energies. Koratkar et al. (1995) have previously shown that the nucleus is a pointlike source in the ROSAT soft X-ray band. We detected in the 2-10 keV band a compact central source with a luminosity of 8.3E+40 erg/s. Comparison of the ASCA data with archival data taken with the Einstein and ROSAT satellites shows that the nucleus varies on timescales of months to years. The variability could be intrinsic, or it could be caused by variable absorption. More rapid variability, on a timescale of \~10^4 s, may be present in the ASCA data. The spectrum from 0.5 to 10 keV is well described by a model consisting of a lightly absorbed (N_H = 7.3E+20 cm^-2) power law with a photon index of 1.68. We find no evidence for significant emission from a thermal plasma; if present, it can account for no more than 25% of the flux in the 0.5-2.0 keV band. The limited photon statistics of our data do not allow us to place significant limits on the presence of iron K emission. (abridged)Comment: To appear in The Astrophysical Journal. LaTex, 18 pages including embedded figures and table

Inflation during oscillations of the inflaton

Damour and Mukhanov have recently devised circumstances in which inflation may continue during the oscillatory phase which ensues once the inflaton field reaches the minimum of its potential. We confirm the existence of this phenomenon by numerical integration. In such circumstances the quantification of the amount of inflation requires particular care. We use a definition based on the decrease of the comoving Hubble length, and show that Damour and Mukhanov overestimated the amount of inflation occurring. We use the numerical calculations to check the validity of analytic approximations.Comment: 5 pages RevTeX file with 5 figures incorporated using eps

A Digital Program (Hope) for People Living With Cancer During the COVID-19 Pandemic:Protocol for a Feasibility Randomized Controlled Trial

Background During the COVID-19 lockdown period in the United Kingdom that began on March 23, 2020, more than a quarter of a million people with cancer reported worsening mental health. Help to Overcome Problems Effectively (Hope) is a self-management program for people with cancer, designed to provide support for distress, unmet needs, and poor psychological health. In light of social distancing during the COVID-19 pandemic, digital delivery of the Hope Programme has become ever more vital for people with cancer. Previous pre-post studies of the digital Hope Programme have found reduced anxiety and depression and improved well-being for people with cancer. However, evaluation of this evidence has been limited by the lack of a control group in these previous studies. Objective We now present a protocol for a feasibility randomized controlled trial of the digital Hope Programme for people with cancer during the COVID-19 pandemic. Primary outcomes will be recruitment, dropout, and adherence rates, and estimations of sample and effect size. To detect signals of efficacy, secondary outcomes will be participant mental health and well-being. Methods Participants will be recruited by Macmillan Cancer Support (MCS) through their social media networks. The study will employ a feasibility wait-list randomized controlled trial (RCT) design, with people with cancer being randomized to join the digital Hope Programme immediately (intervention group [IG]) or join a 6-week waiting list (wait-list control group [WLCG]) with a 1:1 allocation ratio. Participants will complete digital measures of depression, anxiety, mental well-being, and confidence in managing their own health. Online questionnaires will be administered preprogram and 6 weeks postprogram. Results All people who had requested access to the Hope Programme from MCS (N=61) will be invited to participate in the trial. Baseline data collection commenced in April 2020, and the Hope Programme began for the IG in May 2020 and for the WLCG in June 2020. Postprogram data collection was completed by the end of August 2020. Conclusions This feasibility study will provide data to inform the design of a future definitive trial. Wider-scale provision of the digital Hope Programme has potential to improve the lives of thousands of people with cancer and reduce the burden on health care providers during these unprecedented times. Trial Registration ISRCTN Registry ISRCTN79623250; http://www.isrctn.com/ISRCTN79623250 International Registered Report Identifier (IRRID) DERR1-10.2196/24264 </jats:sec

Gravitational Lensing Signature of Long Cosmic Strings

The gravitational lensing by long, wiggly cosmic strings is shown to produce a large number of lensed images of a background source. In addition to pairs of images on either side of the string, a number of small images outline the string due to small-scale structure on the string. This image pattern could provide a highly distinctive signature of cosmic strings. Since the optical depth for multiple imaging of distant quasar sources by long strings may be comparable to that by galaxies, these image patterns should be clearly observable in the next generation of redshift surveys such as the Sloan Digital Sky Survey.Comment: 4 pages, revtex with 3 postscript figures include

An examination of the precipitation delivery mechanisms for Dolleman Island, eastern Antarctic Peninsula

Copyright @ 2004 Wiley-BlackwellThe variability of size and source of significant precipitation events were studied at an Antarctic ice core drilling site: Dolleman Island (DI), located on the eastern coast of the Antarctic Peninsula. Significant precipitation events that occur at DI were temporally located in the European Centre for Medium-Range Weather Forecasting (ECMWF) reanalysis data set, ERA-40. The annual and summer precipitation totals from ERA-40 at DI both show significant increases over the reanalysis period. Three-dimensional backwards air parcel trajectories were then run for 5 d using the ECMWF ERA-15 wind fields. Cluster analyses were performed on two sets of these backwards trajectories: all days in the range 1979–1992 (the climatological time-scale) and a subset of days when a significant precipitation event occurred. The principal air mass sources and delivery mechanisms were found to be the Weddell Sea via lee cyclogenesis, the South Atlantic when there was a weak circumpolar trough (CPT) and the South Pacific when the CPT was deep. The occurrence of precipitation bearing air masses arriving via a strong CPT was found to have a significant correlation with the southern annular mode (SAM); however, the arrival of air masses from the same region over the climatological time-scale showed no such correlation. Despite the dominance in both groups of back trajectories of the westerly circulation around Antarctica, some other key patterns were identified. Most notably there was a higher frequency of lee cyclogenesis events in the significant precipitation trajectories compared to the climatological time-scale. There was also a tendency for precipitation trajectories to come from more northerly latitudes, mostly from 50–70°S. The El Niño Southern Oscillation (ENSO) was found to have a strong influence on the mechanism by which the precipitation was delivered; the frequency of occurrence of precipitation from the east (west) of DI increased during El Niño (La Niña) events