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Research Electronic Data Capture (REDCap) is a secure, web-based electronic data capture application for building and managing surveys and databases. It can also be used for study management, data transfer, and data export into a variety of statistical programs. REDcap was developed and supported by the National Center for Advancing Translational Sciences Program and is used in over 3700 institutions worldwide. It can also be used to track and measure stakeholder engagement, an integral element of research funded by the Patient-Centered Outcomes Research Institute (PCORI). Continuously and accurately tracking and reporting on stakeholder engagement activities throughout the life of a PCORI-funded trial can be challenging, particularly in complex trials with multiple types of engagement.
In this paper, we show our approach for collecting and capturing stakeholder engagement activities using a shareable REDCap tool in one of the PCORI’s first large pragmatic clinical trials (the Comprehensive Post-Acute Stroke Services) to inform other investigators planning cluster-randomized pragmatic trials. Benefits and challenges are highlighted for researchers seeking to consistently monitor and measure stakeholder engagement.
We describe how REDCap can provide a time-saving approach to capturing how stakeholders engage in a PCORI-funded study and reporting how stakeholders influenced the study in progress reports back to PCORI.
Forty years ago, Knut Fladmark (1979) argued that the Pacific Coast offered a viable alternative to the ice-free corridor model for the initial peopling of the Americas—one of the first to support a “coastal migration theory” that remained marginal for decades. Today, the pre-Clovis occupation at the Monte Verde site is widely accepted, several other pre-Clovis sites are well documented, investigations of terminal Pleistocene subaerial and submerged Pacific Coast landscapes have increased, and multiple lines of evidence are helping decode the nature of early human dispersals into the Americas. Misconceptions remain, however, about the state of knowledge, productivity, and deglaciation chronology of Pleistocene coastlines and possible technological connections around the Pacific Rim. We review current evidence for several significant clusters of early Pacific Coast archaeological sites in North and South America that include sites as old or older than Clovis. We argue that stemmed points, foliate points, and crescents (lunates) found around the Pacific Rim may corroborate genomic studies that support an early Pacific Coast dispersal route into the Americas. Still, much remains to be learned about the Pleistocene colonization of the Americas, and multiple working hypotheses are warranted.
The COllaborative project of Development of Anthropometrical measures in Twins (CODATwins) project is a large international collaborative effort to analyze individual-level phenotype data from twins in multiple cohorts from different environments. The main objective is to study factors that modify genetic and environmental variation of height, body mass index (BMI, kg/m2) and size at birth, and additionally to address other research questions such as long-term consequences of birth size. The project started in 2013 and is open to all twin projects in the world having height and weight measures on twins with information on zygosity. Thus far, 54 twin projects from 24 countries have provided individual-level data. The CODATwins database includes 489,981 twin individuals (228,635 complete twin pairs). Since many twin cohorts have collected longitudinal data, there is a total of 1,049,785 height and weight observations. For many cohorts, we also have information on birth weight and length, own smoking behavior and own or parental education. We found that the heritability estimates of height and BMI systematically changed from infancy to old age. Remarkably, only minor differences in the heritability estimates were found across cultural–geographic regions, measurement time and birth cohort for height and BMI. In addition to genetic epidemiological studies, we looked at associations of height and BMI with education, birth weight and smoking status. Within-family analyses examined differences within same-sex and opposite-sex dizygotic twins in birth size and later development. The CODATwins project demonstrates the feasibility and value of international collaboration to address gene-by-exposure interactions that require large sample sizes and address the effects of different exposures across time, geographical regions and socioeconomic status.
The bulk of people we can now be assured, were content with something that hardly deserves a better title than that of a hovel […] in such cabins, with bare head room, amid a filthy litter of broken bones, of food and shattered pottery […] lived the Anglo-Saxons (Leeds 1936: 25–26). This quote from E.T. Leeds, a pioneer of Anglo-Saxon archaeology during the first half of the twentieth century, was inspired by his excavation of settlement remains at Sutton Courtenay, then in Berkshire. Leeds's excavations were actually a breakthrough moment, resulting in the first identification of early medieval settlement structures other than those associated with ecclesiastical sites. In spite of this, the frustration and disappointment with the character and quality of the Sutton Courtenay site are all too apparent in Leeds's assessment. As an expert in Anglo-Saxon artwork, how could he reconcile the skill and craft of fine metalwork, with the ephemeral and impoverished settlement with which he was now dealing? Likewise, where were the great charismatic halls of monumental construction that populated such literary sources as Beowulf? The excavation of the graves of Sutton Hoo, two years after investigations at Sutton Courtney came to a close, served only to amplify the disparity between settlement and burial archaeology—put simply, burials were viewed as richer, grander and far more interesting.
This volume covers aspects of sudden infant and early childhood death and deals with the changes that have occurred over time with the definitions of SIDS, SUDI and SUDIC. It will be indispensable for SIDS researchers, SIDS organisations, paediatric pathologists, forensic pathologists, paediatricians, families, residents in training programs involving paediatrics, physicians, lawyers, law enforcement officials, and other experts in the field. The text will be indispensable for SIDS researchers, SIDS organisations, paediatric pathologists, forensic pathologists, paediatricians and families, in addition to residents in training programs that involve paediatrics. It will also be of use to other physicians, lawyers and law enforcement officials who deal with these cases, and should be a useful addition to all medical examiner/forensic, paediatric and pathology departments, hospital and university libraries on a global scale. Given the marked changes that have occurred in the epidemiology and understanding of SIDS and sudden death in the very young over the past decade, a text such as this is very timely and is also urgently needed.
Roger W Byard, School of Medicine, The University of Adelaide, Adelaide, Australia and Florey Institute of Neuroscience and Mental Health, Victoria, Australia,
Jhodie R Duncan, School of Medicine, The University of Adelaide, Adelaide, Australia and Florey Institute of Neuroscience and Mental Health, Victoria, Australia
There has been a great need for a text such as this for some time now, with the last general book on sudden infant death syndrome (SIDS) published over a decade and a half ago, in 2001. Since that time many significant developments have occurred in our understanding of sudden and unexplained deaths in pediatrics, ranging from updated definitions with increased emphasis on mandatory death scene investigations to highquality scientific work examining the role of neurotransmitter abnormalities in the brain. The issue of sudden death in toddlers over a year of age (SUDC) has also become an area of study, with a clearer understanding of the usefulness of the more general term sudden and unexpected death in infancy (SUDI). The Triple Risk Model has stood the test of time and has facilitated the integration of laboratory-based work with epidemiological risk factors. Many fringe theories have fortunately finally fallen into well-deserved historical obscurity along with odd entities such as status thymicolymphaticus.
As the reader will quickly realise, the text is an extremely eclectic mix of chapters written by experts in their respective fields. Important chapters deal with the history of SIDS, the role of parent organizations in promoting bereavement support, the very raw issue of parental grief, and research into the underlying mechanisms associated with SUDI. The later chapters focus variably on processes and locations, particularly within the brain, the roles of which in SUDI are being more clearly teased out and understood.
Of necessity there is some repetition in chapters, as SIDS and SUDI in general are a heterogeneous mix of mechanisms and processes that cannot be boxed into discrete areas. While this has sometimes led to different authors taking somewhat contradictory positions on certain subjects, it merely reflects the complexity and reality of the SIDS/SUDI arena today.
The editors hope that this text will have enabled experts from a variety of backgrounds to explain and elaborate on their particular areas of study and investigation. It will also serve as a summary of SIDS, SUDI, and SUDC as we know them today, and will lay the foundation for further exciting discoveries. As such, hopefully this book will provide an invaluable resource for individuals across many arenas, including parents, clinicians, medical examiners, and researchers. We are very close to understanding why SIDS/ SUDI occurs: our next challenge is to prevent these tragic deaths from ever happening.
Jhodie R Duncan, School of Medicine, The University of Adelaide, Adelaide, Australia and Florey Institute of Neuroscience and Mental Health, Victoria, Australia,
Roger W Byard, School of Medicine, The University of Adelaide, Adelaide, Australia and Florey Institute of Neuroscience and Mental Health, Victoria, Australia
The term sudden infant death syndrome (SIDS) was first proposed in 1969 in order to focus attention on a subgroup of infants with similar clinical features whose deaths occurred unexpectedly in the postnatal period (1). Today the definition of SIDS refers to death in a seemingly healthy infant younger than 1 year of age whose death remains unexplained after a thorough case investigation including a complete autopsy, review of medical and clinical history, and death scene investigation (2). SIDS is typically associated with a sleep period (3) with death presumed to have occurred during sleep itself or in the transition between sleep and waking (4). This led to application of the terms “cot” or “crib” death; however, these terms are rarely used today. Furthermore, while the definition is inclusive of infants up to 1 year of age, approximately 95% of SIDS deaths occur in the first six months of life with a peak incidence in infants aged between 2 to 4 months (5). While there are distinctive features associated with the syndrome there are no diagnostic features that can be attributed to a SIDS death. Indeed, application of the term relies on a process of elimination and when no known cause of death or contributing factors can be determined, the term SIDS is usually applied. Thus, while the debate continues regarding the definition and use of the term SIDS, and no one definition has been universally accepted, one certainty persists, and that is that SIDS still remains a diagnosis of exclusion (1).
Sudden death in a seemingly healthy infant during sleep is not a phenomenon of modern times, with cases being recorded throughout history for thousands of years. Indeed, one of the first cases is mentioned in the Bible (1 Kings 3:19). However, these deaths have generally been attributed to overlaying, as it was common practice to sleep in the same bed as a child. Indeed, the death of an infant by “overlay” was considered such an issue that by the seventh century the event was a punishable offence (6), with the introduction of a “protective” wooden arcuccio for infants to sleep in during the 18th century in Europe with severe penalties if the infant died in a co-sleeping arrangement and the frame was not used (7).
The early medieval period in Europe is commonly viewed as a time of emerging nations, as the institutions, lineages and territories that we recognise as integral to medieval and later states were established. The preoccupation with nationhood is the primary reason that earlier generations of early medieval scholars often limited the geographic focus of their studies, with their findings feeding back into broader narratives of national culture, identity and ethnicity. Such research traditions have taken some time to evolve, but thankfully the last decade or so has seen a marked increase in the publication of archaeologically orientated studies with a broader remit. The ability to compare and contrast the evidence from other regions has resulted in a much- improved research environment, transforming our understanding of the period. Two of the publications reviewed here, Fortified settlements in early medieval Europe and Making Christian landscapes in Atlantic Europe, represent the latest additions to this positive trend, comprising edited volumes with impressive coverage across the Continent. While the third volume, Social complexity in early medieval rural communities, is concentrated solely on Iberia, it is an equally welcome addition, as its publication in English is likely to broaden readership and open up the archaeology of the area to new audiences. Each contribution explores distinct material, although the articulation of elite power, and the means by which archaeologists can detect that power, is the prominent theme throughout.
The Darwin–Hatherton Glacial system (DHGS) connects the East Antarctic Ice Sheet (EAIS) with the Ross Ice Shelf and is a key area for understanding past variations in ice thickness of surrounding ice masses. Here we present the first detailed measurements of ice thickness and grounding zone characteristics of the DHGS as well as new measurements of ice velocity. The results illustrate the changes that occur in glacier geometry and ice flux as ice flows from the polar plateau and into the Ross Ice Shelf. The ice discharge and the mean basal ice shelf melt for the first 8.5 km downstream of the grounding line amount to 0.24 ± 0.05 km3 a−1 and 0.3 ± 0.1 m a−1, respectively. As the ice begins to float, ice thickness decreases rapidly and basal terraces develop. Constructed maps of glacier geometry suggest that ice drainage from the EAIS into the Darwin Glacier occurs primarily through a deep subglacial canyon. By contrast, ice thins to <200 m at the head of the much slower flowing Hatherton Glacier. The glaciological field study establishes an improved basis for the interpretation of glacial drift sheets at the link between the EAIS and the Ross Ice Sheet.
Fine resolution topographic data derived from methods such as Structure from Motion (SfM) and Multi-View Stereo (MVS) have the potential to provide detailed observations of geomorphological change, but have thus far been limited by the logistical constraints of conducting repeat surveys in the field. Here, we present the results from an automated time-lapse camera array, deployed around an ice-marginal lake on the western margin of the Greenland ice sheet. Fifteen cameras acquired imagery three-times per day over a 426 day period, yielding a dataset of ~19 000 images. From these data we derived 18 point clouds of the ice-margin across a range of seasons and successfully identified calving events (ranging from 234 to 1475 m2 in area and 815–8725 m3 in volume) induced by ice cliff undercutting at the waterline and the collapse of spalling flakes. Low ambient light levels, locally reflective surfaces and the large survey range hindered analysis of smaller scale ice-margin dynamics. Nevertheless, this study demonstrates that an integrated SfM-MVS and time-lapse approach can be employed to generate long-term 3-D topographic datasets and thus quantify ice-margin dynamics at a fine spatio-temporal scale. This approach provides a template for future studies of geomorphological change.
Whether monozygotic (MZ) and dizygotic (DZ) twins differ from each other in a variety of phenotypes is important for genetic twin modeling and for inferences made from twin studies in general. We analyzed whether there were differences in individual, maternal and paternal education between MZ and DZ twins in a large pooled dataset. Information was gathered on individual education for 218,362 adult twins from 27 twin cohorts (53% females; 39% MZ twins), and on maternal and paternal education for 147,315 and 143,056 twins respectively, from 28 twin cohorts (52% females; 38% MZ twins). Together, we had information on individual or parental education from 42 twin cohorts representing 19 countries. The original education classifications were transformed to education years and analyzed using linear regression models. Overall, MZ males had 0.26 (95% CI [0.21, 0.31]) years and MZ females 0.17 (95% CI [0.12, 0.21]) years longer education than DZ twins. The zygosity difference became smaller in more recent birth cohorts for both males and females. Parental education was somewhat longer for fathers of DZ twins in cohorts born in 1990–1999 (0.16 years, 95% CI [0.08, 0.25]) and 2000 or later (0.11 years, 95% CI [0.00, 0.22]), compared with fathers of MZ twins. The results show that the years of both individual and parental education are largely similar in MZ and DZ twins. We suggest that the socio-economic differences between MZ and DZ twins are so small that inferences based upon genetic modeling of twin data are not affected.
Measurements of glacier ice cliff evolution are sparse, but where they do exist, they indicate that such areas of exposed ice contribute a disproportionate amount of melt to the glacier ablation budget. We used Structure from Motion photogrammetry with Multi-View Stereo to derive 3-D point clouds for nine ice cliffs on Khumbu Glacier, Nepal (in November 2015, May 2016 and October 2016). By differencing these clouds, we could quantify the magnitude, seasonality and spatial variability of ice cliff retreat. Mean retreat rates of 0.30–1.49 cm d−1 were observed during the winter interval (November 2015–May 2016) and 0.74–5.18 cm d−1 were observed during the summer (May 2016–October 2016). Four ice cliffs, which all featured supraglacial ponds, persisted over the full study period. In contrast, ice cliffs without a pond or with a steep back-slope degraded over the same period. The rate of thermo-erosional undercutting was over double that of subaerial retreat. Overall, 3-D topographic differencing allowed an improved process-based understanding of cliff evolution and cliff-pond coupling, which will become increasingly important for monitoring and modelling the evolution of thinning debris-covered glaciers.
To evaluate the effectiveness of a computerized clinical decision support intervention aimed at reducing inappropriate Clostridium difficile testing
Retrospective cohort study
University of Pennsylvania Health System, comprised of 3 large tertiary-care hospitals
All adult patients admitted over a 2-year period
Providers were required to use an order set integrated into a commercial electronic health record to order C. difficile toxin testing. The order set identified patients who had received laxatives within the previous 36 hours and displayed a message asking providers to consider stopping laxatives and reassessing in 24 hours prior to ordering C. difficile testing. Providers had the option to continue or discontinue laxatives and to proceed with or forgo testing. The primary endpoint was the change in inappropriate C. difficile testing, as measured by the number of patients who had C. difficile testing ordered while receiving laxatives.
Compared to the 1-year baseline period, the intervention resulted in a decrease in the proportion of inappropriate C. difficile testing (29.6% vs 27.3%; P=.02). The intervention was associated with an increase in the number of patients who had laxatives discontinued and did not undergo C. difficile testing (5.8% vs 46.4%; P<.01) and who had their laxatives discontinued and underwent testing (5.4% vs 35.2%; P<.01). We observed a nonsignificant increase in the proportion of patients with C. difficile related complications (5.0% vs 8.9%; P=.11).
A C. difficile order set was successful in decreasing inappropriate C. difficile testing and improving the timely discontinuation of laxatives.