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Mitochondrial trifunctional protein deficiency is a long-chain fatty acid disorder that may include manifestations of severe cardiomyopathy and arrhythmias. The pathophysiology for the severe presentation is unclear but is an indicator for worse outcomes. Triheptanoin, a synthetic medium chain triglyceride, has been reported to reverse cardiomyopathy in some individuals, but there is limited literature in severe cases. We describe a neonatal onset of severe disease whose clinical course was not improved despite mechanical support and triheptanoin.
A clinical decision support system, EvalMpox, was developed to apply person under investigation (PUI) criteria for patients presenting with rash and to recommend testing for PUIs. Of 668 patients evaluated, an EvalMpox recommendation for testing had a positive predictive value of 35% and a negative predictive value of 99% for a positive mpox test.
The purpose of this study was to explore overall recovery time and post-concussive symptoms (PCSS) of pediatric concussion patients who were referred to a specialty concussion clinic after enduring a protracted recovery (>28 days). This included patients who self-deferred care or received management from another provider until recovery became complicated. It was hypothesized that protracted recovery patients, who initiated care within a specialty concussion clinic, would have similar recovery outcomes as typical acute injury concussion patients (i.e., within 3 weeks).
Participants and Methods:
Retrospective data were gathered from electronic medical records of concussion patients aged 6-19 years. Demographic data were examined based on age, gender, race, concussion history, and comorbid psychiatric diagnosis. Concussion injury data included days from injury to initial clinic visit, total visits, PCSS scores, days from injury to recovery, and days from initiating care with a specialty clinic to recovery. All participants were provided standard return-to-learn and return-to-play protocols, aerobic exercise recommendations, behavioral health recommendations, personalized vestibular/ocular motor rehabilitation exercises, and psychoeducation on the expected recovery trajectory of concussion.
Results:
52 patients were included in this exploratory analysis (Mean age 14.6, SD ±2.7; 57.7% female; 55.7% White, 21.2% Black or African American, 21.2% Hispanic). Two percent of our sample did not disclose their race or ethnicity. Prior concussion history was present in 36.5% of patients and 23.1% had a comorbid psychiatric diagnosis. The patient referral distribution included emergency departments (36%), local pediatricians (26%), neurologists (10%), other concussion clinics (4%), and self-referrals (24%).
Given the nature of our specialty concussion clinic sample, the data was not normally distributed and more likely to be skewed by outliers. As such, the median value and interquartile range were used to describe the results. Regarding recovery variables, the median days to clinic from initial injury was 50.0 (IQR=33.5-75.5) days, the median PCSS score at initial visit was 26.0 (IQR=10.0-53.0), and the median overall recovery time was 81.0 (IQR=57.0-143.3) days.
After initiating care within our specialty concussion clinic, the median recovery time was 21.0 (IQR=14.0-58.0) additional days, the median total visits were 2.0 (IQR=2.0-3.0), and the median PCSS score at follow-up visit was 7.0 (IQR=1-17.3).
Conclusions:
Research has shown that early referral to specialty concussion clinics may reduce recovery time and the risk of protracted recovery. Our results extend these findings to suggest that patients with protracted recovery returned to baseline similarly to those with an acute concussion injury after initiating specialty clinic care. This may be due to the vast number of resources within specialty concussion clinics including tailored return-to-learn and return-to-play protocols, rehabilitation recommendations consistent with research, and home exercises that supplement recovery. Future studies should compare outcomes of protracted recovery patients receiving care from a specialty concussion clinic against those who sought other forms of treatment. Further, evaluating the influence of comorbid factors (e.g., psychiatric and/or concussion history) on pediatric concussion recovery trajectories may be useful for future research.
The Eighth World Congress of Pediatric Cardiology and Cardiac Surgery (WCPCCS) will be held in Washington DC, USA, from Saturday, 26 August, 2023 to Friday, 1 September, 2023, inclusive. The Eighth World Congress of Pediatric Cardiology and Cardiac Surgery will be the largest and most comprehensive scientific meeting dedicated to paediatric and congenital cardiac care ever held. At the time of the writing of this manuscript, The Eighth World Congress of Pediatric Cardiology and Cardiac Surgery has 5,037 registered attendees (and rising) from 117 countries, a truly diverse and international faculty of over 925 individuals from 89 countries, over 2,000 individual abstracts and poster presenters from 101 countries, and a Best Abstract Competition featuring 153 oral abstracts from 34 countries. For information about the Eighth World Congress of Pediatric Cardiology and Cardiac Surgery, please visit the following website: [www.WCPCCS2023.org]. The purpose of this manuscript is to review the activities related to global health and advocacy that will occur at the Eighth World Congress of Pediatric Cardiology and Cardiac Surgery.
Acknowledging the need for urgent change, we wanted to take the opportunity to bring a common voice to the global community and issue the Washington DC WCPCCS Call to Action on Addressing the Global Burden of Pediatric and Congenital Heart Diseases. A copy of this Washington DC WCPCCS Call to Action is provided in the Appendix of this manuscript. This Washington DC WCPCCS Call to Action is an initiative aimed at increasing awareness of the global burden, promoting the development of sustainable care systems, and improving access to high quality and equitable healthcare for children with heart disease as well as adults with congenital heart disease worldwide.
Publicly available health information is increasingly important for patients and their families. While the average US citizen reads at an 8th-grade level, electronic educational materials for patients and families are often advanced. We assessed the quality and readability of publicly available resources regarding hypoplastic left heart syndrome (HLHS).
Methods:
We queried four search engines for “hypoplastic left heart syndrome”, “HLHS”, and “hypoplastic left ventricle”. The top 30 websites from searches on Google, Yahoo!, Bing, and Dogpile were combined into a single list. Duplicates, commercial websites, physician-oriented resources, disability websites, and broken links were removed. Websites were graded for accountability, content, interactivity, and structure using a two-reviewer system. Nonparametric analysis of variance was performed.
Results:
Fifty-two websites were analysed. Inter-rater agreement was high (Kappa = 0.874). Website types included 35 hospital/healthcare organisation (67.3%), 12 open access (23.1%), 4 governmental agency (7.7%), and 1 professional medical society (1.9%). Median total score was 19 of 39 (interquartile range = 15.8–25.3): accountability 5.5 of 17 (interquartile range = 2.0–9.3), content 8 of 12 (interquartile range = 6.4–10.0), interactivity 2 of 6 (interquartile range = 2.0–3.0), and structure 3 of 4 (interquartile range = 2.8–4.0). Accountability was low with 32.7% (n = 17) of sites disclosing authorship and 26.9% (n = 14) citing sources. Forty-two percent (n = 22) of websites were available in Spanish. Total score varied by website type (p = 0.03), with open access sites scoring highest (median = 26.5; interquartile range = 20.5–28.6) and hospital/healthcare organisation websites scoring lowest (median = 17.5; interquartile range = 13.5–21.5). Score differences were driven by differences in accountability (p = 0.001) – content scores were similar between groups (p = 0.25). Overall readability was low, with median Flesch–Kincaid Grade Level of 11th grade (interquartile range = 10th–12th grade).
Conclusions:
Our evaluation of popular websites about HLHS identifies multiple opportunities for improvement, including increasing accountability by disclosing authorship and citing sources, enhancing readability by providing material that is understandable to readers with the full spectrum of educational background, and providing information in languages besides English, all of which would enhance health equity.
We present the third data release from the Parkes Pulsar Timing Array (PPTA) project. The release contains observations of 32 pulsars obtained using the 64-m Parkes ‘Murriyang’ radio telescope. The data span is up to 18 yr with a typical cadence of 3 weeks. This data release is formed by combining an updated version of our second data release with $\sim$3 yr of more recent data primarily obtained using an ultra-wide-bandwidth receiver system that operates between 704 and 4032 MHz. We provide calibrated pulse profiles, flux density dynamic spectra, pulse times of arrival, and initial pulsar timing models. We describe methods for processing such wide-bandwidth observations and compare this data release with our previous release.
The International VLBI Service for Geodesy and Astrometry (IVS) regularly provides high-quality data to produce Earth Orientation Parameters (EOP), and for the maintenance and realisation of the International Terrestrial and Celestial Reference Frames, ITRF and ICRF. The first iteration of the celestial reference frame (CRF) at radio wavelengths, the ICRF1, was adopted by the International Astronomical Union (IAU) in 1997 to replace the FK5 optical frame. Soon after, the IVS began official operations and in 2009 there was a significant increase in data sufficient to warrant a second iteration of the CRF, ICRF2. The most recent ICRF3, was adopted by the IAU in 2018. However, due to the geographic distribution of observing stations being concentrated in the Northern hemisphere, CRFs are generally weaker in the South due to there being fewer Southern Hemisphere observations. To increase the Southern Hemisphere observations, and the density, precision of the sources, a series of deep South observing sessions was initiated in 1995. This initiative in 2004 became the IVS Celestial Reference Frame Deep South (IVS-CRDS) observing programme. This paper covers the evolution of the CRDS observing programme for the period 1995–2021, details the data products and results, and concludes with a summary of upcoming improvements to this ongoing project.
Theories of early cooperation in human society often draw from a small sample of ethnographic studies of surviving populations of hunter–gatherers, most of which are now sedentary. Borneo hunter–gatherers (Punan, Penan) have seldom figured in comparative research because of a decades-old controversy about whether they are the descendants of farmers who adopted a hunting and gathering way of life. In 2018 we began an ethnographic study of a group of still-nomadic hunter–gatherers who call themselves Punan Batu (Cave Punan). Our genetic analysis clearly indicates that they are very unlikely to be the descendants of neighbouring agriculturalists. They also preserve a song language that is unrelated to other languages of Borneo. Dispersed travelling groups of Punan Batu with fluid membership use message sticks to stay in contact, co-operate and share resources as they journey between rock shelters and forest camps. Message sticks were once widespread among nomadic Punan in Borneo, but have largely disappeared in sedentary Punan villages. Thus the small community of Punan Batu offers a rare glimpse of a hunting and gathering way of life that was once widespread in the forests of Borneo, where prosocial behaviour extended beyond the face-to-face community, facilitating successful collective adaptation to the diverse resources of Borneo's forests.
To assess experience, physical infrastructure, and capabilities of high-level isolation units (HLIUs) planning to participate in a 2018 global HLIU workshop hosted by the US National Emerging Special Pathogens Training and Education Center (NETEC).
Design:
An electronic survey elicited information on general HLIU organization, operating costs, staffing models, and infection control protocols of select global units.
Setting and participants:
The survey was distributed to site representatives of 22 HLIUs located in the United States, Europe, and Asia; 19 (86%) responded.
Methods:
Data were coded and analyzed using descriptive statistics.
Results:
The mean annual reported budget for the 19 responding units was US$484,615. Most (89%) had treated a suspected or confirmed case of a high-consequence infectious disease. Reported composition of trained teams included a broad range of clinical and nonclinical roles. The mean number of HLIU beds was 6.37 (median, 4; range, 2–20) for adults and 4.23 (median, 2; range, 1–10) for children; however, capacity was dependent on pathogen.
Conclusions:
Responding HLIUs represent some of the most experienced HLIUs in the world. Variation in reported unit infrastructure, capabilities, and procedures demonstrate the variety of HLIU approaches. A number of technical questions unique to HLIUs remain unanswered related to physical design, infection prevention and control procedures, and staffing and training. These key areas represent potential focal points for future evidence and practice guidelines. These data are important considerations for hospitals considering the design and development of HLIUs, and there is a need for continued global HLIU collaboration to define best practices.
Using existing data from clinical registries to support clinical trials and other prospective studies has the potential to improve research efficiency. However, little has been reported about staff experiences and lessons learned from implementation of this method in pediatric cardiology.
Objectives:
We describe the process of using existing registry data in the Pediatric Heart Network Residual Lesion Score Study, report stakeholders’ perspectives, and provide recommendations to guide future studies using this methodology.
Methods:
The Residual Lesion Score Study, a 17-site prospective, observational study, piloted the use of existing local surgical registry data (collected for submission to the Society of Thoracic Surgeons-Congenital Heart Surgery Database) to supplement manual data collection. A survey regarding processes and perceptions was administered to study site and data coordinating center staff.
Results:
Survey response rate was 98% (54/55). Overall, 57% perceived that using registry data saved research staff time in the current study, and 74% perceived that it would save time in future studies; 55% noted significant upfront time in developing a methodology for extracting registry data. Survey recommendations included simplifying data extraction processes and tailoring to the needs of the study, understanding registry characteristics to maximise data quality and security, and involving all stakeholders in design and implementation processes.
Conclusions:
Use of existing registry data was perceived to save time and promote efficiency. Consideration must be given to the upfront investment of time and resources needed. Ongoing efforts focussed on automating and centralising data management may aid in further optimising this methodology for future studies.
Sustainable invasive weed management must address treatment effects on desired vegetation. Our objective was to determine the influence of clopyralid plus 2,4-D, glyphosate, and fosamine, at various application rates and timing, on the density and biomass of Russian knapweed and desired plant groups growing in association with this invasive weed. In a randomized complete block design with four replications, three herbicides by three herbicide rates by three herbicide application timings and a nontreated control were factorially applied to two sites located along the Missouri River riparian corridor in Montana. Clopyralid plus 2,4-D, glyphosate, and fosamine were applied during the spring rosette stage of Russian knapweed (June), the bud to bloom stage of Russian knapweed (July), or the flowering stage of Russian knapweed (August). Herbicide rates were considered low, medium, and high based on label rates of clopyralid plus 2,4-D, glyphosate, or fosamine. Density and biomass of all species were sampled 3 yr after treatment. Russian knapweed biomass decreased from 125 to about 25 g/m2 using clopyralid plus 2,4-D, irrespective of rate or timing of application. Russian knapweed density was reduced by about half by this mixture of herbicides. Nonnative grass density and biomass were maintained, whereas native grasses increased using clopyralid plus 2,4-D at medium or high rates. Neither glyphosate nor fosamine provided substantial Russian knapweed control or increases in grasses. Too few forbs were present to analyze their response to the treatments. We believe that herbicides must be combined with revegetation in areas lacking a diverse mixture of desired species capable of capturing resources made available by controlling Russian knapweed.
Satellite imagery indicates that the floating terminus of Pine Island Glacier has changed little in extent over the past two decades. Data on the velocity and thickness of the glacier reveal that calving of 28 ± 4 Gta−1 accounts for only half of the ice input near the grounding line. The apparently steady configuration implies that the remainder of the input is lost by basal melting at a mean rate of 12 ± 3 ma−1. Ocean circulation in Pine Island Bay transports +1°C waters beneath the glacier and temperatures recorded in melt-laden outflows show that heat loss from the ocean is consistent with the requirements of the calculated melt rate. The combination of iceberg calving and basal melting lies at the lower end of estimates for the total accumulation over the catchment basin, drawing into question previous estimates of a significantly positive mass budget for this part of the ice sheet.
A continuous record of organic carbon δ13C from a buried soil sequence in south-central Texas demonstrates: 1) strong coupling between marine and adjacent continental ecosystems in the late Pleistocene as a result of glacial meltwater entering the Gulf of Mexico and 2) ecosystem decoupling in the Holocene associated with a reduction of meltwater and a shift in global circulation patterns. In the late Pleistocene, reduction in C4 plant productivity correlates with two well-documented glacial meltwater pulses (∼15,000 and 12,000 14C yr B.P.), indicating a cooler-than-present adjacent continental environment. Increased C4 production between 11,000 and 10,000 14C yr B.P. suggests that the Younger Dryas was a warm interval responding to the diversion of glacial meltwater away from the Mississippi River. With waning meltwater flow, C4 productivity generally increased throughout the Holocene, culminating in peak warm intervals at ∼5000 and 2000 14C yr B.P. Shifts in the abundances of C3–C4 plants through the late Quaternary show no correlation to ecophysiological responses to atmospheric CO2 concentration.
Species richness and diversity are important indicators of ecosystem function and may be related to plant community resistance to invasion by nonindigenous species. Our specific objective was to determine the influence of clopyralid plus 2,4-D, glyphosate, and fosamine, at different application rates and timings, on richness and diversity of total species, total native species, and total nonnative species within a Russian knapweed–infested plant community. Twenty-eight treatments (3 herbicides by 3 rates by 3 application timings, and an untreated control) were applied to two sites located along the Missouri River riparian corridor in Montana. Clopyralid plus 2,4-D, glyphosate, and fosamine were applied in June (spring rosette stage of Russian knapweed), July (bud to bloom stage of Russian knapweed), and August (flowering stage of Russian knapweed). Herbicide rates were clopyralid plus 2,4-D at 0.08 (clopyralid) + 0.42 (2,4-D), 0.13 + 0.67, and 0.18 + 0.92 kg ai ha−1; glyphosate at 0.6, 1.2, and 1.8 kg ai ha−1; fosamine at 3.6, 7.2, and 10.8 kg ai ha−1. Density of each species was recorded during June and August of 2001 and 2002. Species richness and Simpson's Reciprocal Index (1/D) were calculated. By August 2002, only the glyphosate treatment (4.6 species m−2) yielded greater total richness over that of the control (3.5 species m−2). At that time, diversity after applying clopyralid plus 2,4-D remained similar to that of the control (1.4), but glyphosate (2.3) and fosamine (2.0) increased total species diversity. Nonnative grasses and forbs accounted for the increases in richness and diversity. Glyphosate may be appropriate for enhancing ecosystem function and possibly niche occupation to preempt reinvasion by Russian knapweed, but restoring native species seems unlikely using any of these herbicides alone.
A 5.4-m sequence of peat and marl overlying a basal clay in a northern Belize wetland was studied to assess salinity changes over the past 7000 yr. The distribution of ostracods, gastropods, and foraminifers revealed initially freshwater conditions in a terrestrial wetland, changing to at least mesohaline conditions by about 5600 yr B.P. The mesohaline conditions corresponded to the formation of an open-water lagoon (and precipitation of a lacustrine marl) that was contemporaneous with rapidly rising sea level in the area. A mangrove peat filled the lagoon by 4800 yr B.P. probably as a result of increasingly shallow waters as sea level rise slowed and marl precipitation continued. A new lagoon began to form sometime after 3400 yr B.P. Freshwater ostracods and gastropods found in the marl of this lagoon suggest that it formed under near-limnetic conditions. Freshwater input likely resulted from massive deforestation by the Maya that began by 4400 yr B.P. Subsidence of the mangrove peat likely permitted the formation of a lagoon. A peat has filled the lagoon since at least 500 yr B.P.
Fontan survivors have depressed cardiac index that worsens over time. Serum biomarker measurement is minimally invasive, rapid, widely available, and may be useful for serial monitoring. The purpose of this study was to identify biomarkers that correlate with lower cardiac index in Fontan patients.
Methods and results
This study was a multi-centre case series assessing the correlations between biomarkers and cardiac magnetic resonance-derived cardiac index in Fontan patients ⩾6 years of age with biochemical and haematopoietic biomarkers obtained ±12 months from cardiac magnetic resonance. Medical history and biomarker values were obtained by chart review. Spearman’s Rank correlation assessed associations between biomarker z-scores and cardiac index. Biomarkers with significant correlations had receiver operating characteristic curves and area under the curve estimated. In total, 97 cardiac magnetic resonances in 87 patients met inclusion criteria: median age at cardiac magnetic resonance was 15 (6–33) years. Significant correlations were found between cardiac index and total alkaline phosphatase (−0.26, p=0.04), estimated creatinine clearance (0.26, p=0.02), and mean corpuscular volume (−0.32, p<0.01). Area under the curve for the three individual biomarkers was 0.63–0.69. Area under the curve for the three-biomarker panel was 0.75. Comparison of cardiac index above and below the receiver operating characteristic curve-identified cut-off points revealed significant differences for each biomarker (p<0.01) and for the composite panel [median cardiac index for higher-risk group=2.17 L/minute/m2 versus lower-risk group=2.96 L/minute/m2, (p<0.01)].
Conclusions
Higher total alkaline phosphatase and mean corpuscular volume as well as lower estimated creatinine clearance identify Fontan patients with lower cardiac index. Using biomarkers to monitor haemodynamics and organ-specific effects warrants prospective investigation.
Clinical databases in congenital and paediatric cardiac care provide a foundation for quality improvement, research, policy evaluations and public reporting. Structured audits verifying data integrity allow database users to be confident in these endeavours. We report on the initial audit of the Pediatric Cardiac Critical Care Consortium (PC4) clinical registry.
Materials and methods
Participants reviewed the entire registry to determine key fields for audit, and defined major and minor discrepancies for the audited variables. In-person audits at the eight initial participating centres were conducted during a 12-month period. The data coordinating centre randomly selected intensive care encounters for review at each site. The audit consisted of source data verification and blinded chart abstraction, comparing findings by the auditors with those entered in the database. We also assessed completeness and timeliness of case submission. Quantitative evaluation of completeness, accuracy, and timeliness of case submission is reported.
Results
We audited 434 encounters and 29,476 data fields. The aggregate overall accuracy was 99.1%, and the major discrepancy rate was 0.62%. Across hospitals, the overall accuracy ranged from 96.3 to 99.5%, and the major discrepancy rate ranged from 0.3 to 0.9%; seven of the eight hospitals submitted >90% of cases within 1 month of hospital discharge. There was no evidence for selective case omission.
Conclusions
Based on a rigorous audit process, data submitted to the PC4 clinical registry appear complete, accurate, and timely. The collaborative will maintain ongoing efforts to verify the integrity of the data to promote science that advances quality improvement efforts.