Collection Program Research Articles

The Prevalence of Sickle Cell Disease in Colorado and Methodologies of the Colorado Sickle Cell Data Collection Program: Public Health Surveillance Study.

Sickle cell disease (SCD) is a genetic blood disorder that affects approximately 100,000 individuals in the United States, with the highest prevalence among Black or African American populations. While advances in care have improved survival, comprehensive state-level data on the prevalence of SCD remain limited, which hampers efforts to optimize health care services. To address this gap, the Colorado Sickle Cell Data Collection (CO-SCDC) program was established in 2021 as part of the Centers for Disease Control and Prevention's initiative to enhance surveillance and public health efforts for SCD. The objectives of this study were to describe the establishment of the CO-SCDC program and to provide updated estimates of the prevalence and birth prevalence of SCD in Colorado, including geographic dispersion. Additional objectives include evaluating the accuracy of case identification methods and leveraging surveillance activities to inform public health initiatives. Data were collected from Health Data Compass (a multi-institutional data warehouse) containing electronic health records from the University of Colorado Health and Children's Hospital Colorado for the years 2012-2020. Colorado newborn screening program data were included for confirmed SCD diagnoses from 2001 to 2020. Records were linked using the Colorado University Record Linkage tool and deidentified for analysis. Case definitions, adapted from the Centers for Disease Control and Prevention's Registry and Surveillance System for Hemoglobinopathies project, classified cases as possible, probable, or definite SCD. Clinical validation by hematologists was performed to ensure accuracy, and prevalence rates were calculated using 2020 US Census population estimates. In 2019, 435 individuals were identified as living with SCD in Colorado, an increase of 16%-40% over previous estimates, with the majority (n=349, 80.2%) identifying as Black or African American. The median age of individuals was 19 years. The prevalence of SCD was highest in urban counties, with concentrations in Arapahoe, Denver, and El Paso counties. Birth prevalence of SCD increased from 11.9 per 100,000 live births between 2010 and 2014 to 20.1 per 100,000 live births between 2015 and 2019 with 58.5% (n=38) of cases being hemoglobin (Hb) SS or HbSβ0 thalassemia subtypes. The study highlighted a 67% (n=26) increase in SCD births over the decade, correlating with the growth of the Black or African American population in the state. The CO-SCDC program successfully established the capacity to perform SCD surveillance and, in doing so, identified baseline prevalence estimates for SCD in Colorado. The findings highlight geographic dispersion across Colorado counties, highlighting the need for equitable access to specialty care, particularly for rural populations. The combination of automated data linkage and clinical validation improved case identification accuracy. Future efforts will expand surveillance to include claims data to better capture health care use and address potential underreporting. These results will guide public health interventions aimed at improving care for individuals with SCD in Colorado.

Collective residential neighbourhoods in Algeria: between reality and planning. A case study of the 800 Housing Units neighbourhood in Batna City

The housing problem, or housing crisis, affecting most Algerian cities has compelled political and executive authorities at all levels (central, regional, and local) to adopt numerous housing policies aimed at reducing the significant gap between the two sides of the housing equation (high demand – low supply). Additionally, the challenge of providing housing units to realize all planned housing projects troubles local officials. Therefore, there has been a trend towards prioritizing collective housing projects to rationalize property consumption and enhance the real estate portfolio of local communities. Batna city has had its share of these collective housing programs, and our research paper focused on its deteriorating reality due to numerous changes affecting both the built and unbuilt environment. This has led to a decline in the quality of life in these neighbourhoods, prompting the intervention of relevant authorities to launch ‘urban improvement’ projects to rectify the imbalances recorded in the urban aspect of most collective residential neighbourhoods, including the 800 Housing Units neighbourhood (800-Unit Neighbourhood) as a good example. The process has been initiated to stop the aforementioned area from a deteriorating and elevate it from poor condition to a better, if not ideal, situation. In conclusion, we recommend that urban laws be activated to halt any illegal alterations or modifications, and above all, that design aspect of collective housing units during the planning phase be considered to align with residents’ preferences before the latter occupy them and make changes, thereby avoiding visual pollution with urban concepts.

Cormorant predation in fyke net fishing: The direct effects of a protected bird on coastal commercial fishing

The population size of great cormorants, Phalacrocorax carbo sinensis, has risen steeply in the Baltic Sea over the past 40 years. The growing population has resulted in polarized conflicts between conservation and coastal fisheries due to the losses cormorants may inflict on fisheries. Mitigation of the conflicts requires objective estimates of true losses to fisheries, but quantitative research on losses has been scarce. We used continuous video-recordings to systematically quantify cormorant visits and their activity at 15 fyke nets during the 2022–2023 breeding and post breeding seasons. More than 2400 h of video footage were recorded, in which cormorants were found for 664 h. We also quantified the frequency of fish injured by birds in coastal fishing catches using data from the EU Fisheries Data Collection Program including data from fyke nets and gill nets. Our results show that cormorants frequently foraged in open, floating fyke nets but relatively rarely in submerged nets, leading to significantly higher losses in the former. Monitoring data from fyke and gill net catches covering the entire Finnish coast revealed that the proportion of bird-injured fish in catches is very modest (0.5 %) but can be considerable in individual catches. Finally, results indicate that cormorant visits and the proportion of injured fish in the catch tend to increase when distance to the nearest cormorant colony decreases. We conclude that the losses caused by birds are generally modest, except in open fyke nets where cormorants may conduct hundreds of dives and catch dozens of fish a day. Our study shows that cormorant depredation is highly variable in time and space, but also partly manageable by selecting gear that conforms to local cormorant pressures. We underline the importance of systematic scientific research when measuring damage caused by cormorants and ask for evidence-based political strategies to mitigate perceived cormorant problems.

Decentralising digital humanities: exploring blockchain technology and “web3” for the Sloane Lab and Towards a National Collection (TaNC)

PurposeAdvancements in Internet technologies greatly influence digital humanities, yet research investigating web3 (i.e. the blockchain-based, decentralised web) within that domain remains limited. The purpose of this paper is to address that gap, presenting a state-of-the-art synthesis of web3-related technologies for digital humanities infrastructures and exploring associated risks and challenges.Design/methodology/approachFollowing a review of the literature, the authors scope out ways blockchain technology, peer-to-peer decentralised storage and other web3 technologies could support digital humanities infrastructures, especially in the context of digital cultural heritage. In this discussion, particular cognisance is given to the needs and aims of the UK’s Arts and Humanities Research Council funded Towards a National Collection programme, which seeks to break down the barriers that exist between the UK’s cultural heritage collections.FindingsWeb3 introduces novel tools and processes that could benefit digital humanities infrastructures, enabling decentralisation and facilitating open access data storage. Yet, significant barriers to adoption remain, such as the requirement for highly specialised technical expertise. Risks and challenges must also be considered prior to any use, including legal, ethical and technical safeguards.Research limitations/implicationsThis study explores opportunities and risks of web3 for digital humanities, through the lens of digital cultural heritage infrastructures and their requirements, including decentralised storage and persistent identification. It does not provide a holistic overview of all web3 technologies.Practical implicationsThe authors identify practical uses of web3 technologies for digital humanities projects, outlining potential applications concerning decentralised storage and persistent identification.Originality/valueThe authors push forward current knowledge and literature on the intersection of web3 and digital humanities, outlining also practical recommendations for scholars, practitioners and funding organisations.

Isotopic heterogeneity in U.S. Urban water supply systems reflects climatic, environmental, and sociodemographic factors: Implications for forensic identification.

The forensic application of stable oxygen isotope data from human tissues depends on naturally occurring isotopic variation in drinking water across geographic areas. One factor which complicates interpretation of forensic data is local variability: if a wide range of drinking water values is in a small geographic region it may be difficult to identify or rule out that region as a location of origin. We examine data from community collection programs documenting tap water isotope variation within 30 cities\developed areas throughout the United States. Isotopic variation within individual developed areas ranged widely, from essentially nil to greater than 9‰ (δ18O interdecile range). Many (14/30) of the study areas exhibited multi-modal isotope distributions, even in cases where the isotopic range was very small (e.g., <2.0‰), suggesting that the use of multiple, isotopically different sources was common. Most variation was attributed to differences in the source-region altitude or degree of evaporation for different water sources, and we observe limited variation in areas where contrasts in these variables are small. Variation tended to be largest in cities across the western USA. We explored correlations between the magnitude of local isotopic variation and climatic, environmental, and socioeconomic variables. We found that higher levels of variation occurred at sites where local water resources were likely to be more isotopically heterogeneous and in lower supply, consistent with the development of supply systems in these areas that access diverse and isotopically heterogeneous water resources. We also found that variation was positively correlated with larger developed areas, suggesting that pressures related to city growth may affect the degree to which infrastructure tapping diverse water resources is developed. Collectively, our results suggest that the influence of local tap water isotope heterogeneity on the precision of forensic geolocation is systematic and somewhat predictable, information to be factored into future applications.

Analisis Kinerja Badan Amil Zakat Nasional Kabupaten Siak dalam Mengentaskan Kemiskinan

According to BPS data, the poor population in Siak district in 2022 will be 25.71 thousand people or 5.07%. An important factor that can influence the level of poverty is income. A solution from an Islamic perspective to the problem of poverty is optimizing zakat. According to Law Number 23 of 2011 concerning Zakat, it is stated that zakat is to realize community welfare and overcome poverty. One of the institutions formed by the government to manage and distribute zakat, infaq and alms is the National Zakat Amil Agency (BAZNAS). The benchmark for the success of alleviating poverty through optimizing zakat is the performance of BAZNAS. This research analyzes the performance of the Siak Regency National Zakat Amil Agency in its efforts to eradicate poverty. This research has two approaches, namely qualitative and quantitative or mixed method. Data sources used in this research include primary data, secondary data, documents and archives and literature studies. Using interview, observation and questionnaire methods, the performance of BAZNAS Siak Regency can be known through the National Zakat Index 2.0 approach. The components of this index are macro dimensions and micro dimensions. The macro dimension reflects the role of the government and society in contributing to building zakat institutions and the micro dimension describes institutional governance and the impact of zakat. The research results show that BAZNAS Siak Regency in two macro dimensions and micro dimensions obtained good performance scores. The good performance of zakat institutions will influence the results of zakat collection, distribution and utilization programs. The influence of good performance will have a direct impact on mustahik in efforts to improve their welfare which will ultimately help the government in alleviating poverty. In this research, it was found that the impact of good BAZNAS performance for mustahik was materially an increase in income and asset ownership, spiritually in the form of increased worship and awareness of zakat.

An Information Ecosystem Map of Resources Supporting the Mobilization and Discovery of Paleontological Specimen Data

Over the last decade, the United States paleontological collections community has invested heavily in the digitization of specimen-based data, including over 10 million USD funded through the National Science Foundation’s Advancing Digitization of Biodiversity Collections program. Fossil specimen data—9.0 million records and counting (Global Biodiversity Information Facility 2024)—are now accessible on open science platforms such as the Global Biodiversity Information Facility (GBIF). However, the full potential of this data is far from realized due to fundamental challenges associated with mobilization, discoverability, and interoperability of paleontological information within the existing cyberinfrastructure landscape and data pipelines. Additionally, it can be difficult for individuals with varying expertise to develop a comprehensive understanding of the existing landscape due to its breadth and complexity. Here, we present preliminary results from a project aiming to explore how we might address these problems. Funding from the US National Science Foundation (NSF) to the University of Colorado Museum of Natural History, Smithsonian National Museum of Natural History, and Arizona State University will result in, among other products, an “ecosystem map” for the paleontological collections community. This map will be an information-rich visualization of entities (e.g. concepts, systems, platforms, mechanisms, drivers, tools, documentation, data, standards, people, organizations) operating in, intersecting with, or existing in parallel to our domain. We are inspired and informed by similar efforts to map the biodiversity informatics landscape (Bingham et al. 2017) and the research infrastructure landscape (Distributed System of Scientific Collections 2024), as well as by many ongoing metadata cataloging projects, e.g. re3data and the Global Registry of Scientific Collections (GRSciColl). Our strategy for developing this ecosystem map is to model the existing information and systems landscape by characterizing entities, e.g. potentially in a graph database as nodes with relationships to other nodes. The ecosystem map will enable us to provide guidance for communities working across different sectors of the landscape, promoting a shared understanding of the ecosystem that everyone works in together. We can also use the map to identify points of entry and engagement at various stages of the paleontological data process, and to engage diverse members within the paleontological community. We see three primary user types for this map: people new(er) to the community, people with expertise in a subset of the community, and people working to integrate initiatives and systems across communities. Each of these user types needs tailored access to the ecosystem map and its community knowledge. By promoting shared knowledge with the map, users will be able to identify their own space within the ecosystem and the connections or partnerships that they can utilize to expand their knowledge or resources, relieving the burden on any single individual to hold a comprehensive understanding. For example, the flow of taxonomic information between publications, collections, digital resources, and biodiversity aggregators is not straightforward or easy to understand. A person with expertise in collections care may want to use the ecosystem map to understand why taxonomic identifications associated with their specimen occurrence records are showing up incorrectly when published to GBIF. We envision that our final ecosystem map will visualize the flow of taxonomic information and how it is used to interpret specimen occurrence data, thereby highlighting to this user where problems may be happening and whom to ask for help in addressing them (Fig. 1). Ultimately, development of this map will allow us to identify mobilization pathways for paleontological data, highlight core cyberinfrastructure resources, define cyberinfrastructure gaps, strategize future partnerships, promote shared knowledge, and engage a broader array of expertise in the process. Contributing domain-based evidence FAIRly*2 requires expertise that bridges the content (e.g. paleontology) and the mechanics (e.g. informatics). By centering the role of humans in open science cyberinfrastructure throughout our process, we hope to develop systems that create and sustain such expertise.

A-122 Evaluation of the Performance of the BD MiniDraw™ Capillary Blood Collection System Under Various Transport Conditions

Abstract Background Specimen transport is a vital component of the preanalytical phase. External factors such as temperature fluctuations, vibrations, shock, and prolonged transport times may negatively impact specimen integrity and compromise test results. A study was performed to evaluate the effects of temperature extremes and simulated transportation on specimen quality in the BD MiniDraw™ Capillary Blood Collection System with BD MiniDraw™ H&amp;H and SST™ Capillary Blood Collection Tubes (BD MiniDraw™ H&amp;H, BD MiniDraw™ SST™). The BD MiniDraw™ Capillary Blood Collection System enables capillary blood collection by trained healthcare workers in non-traditional settings (i.e., retail pharmacies and clinics). Methods Sixteen adult participants were enrolled from the on-site Associate Sample Collection Program. Venous blood was collected via venipuncture into reference comparator and no-additive tubes. Venous blood from no-additive tubes was then pooled into a secondary container for aliquoting into BD MiniDraw™ SST™ and MiniDraw™ H&amp;H tubes. Thirty tubes per tube type were separated into 6 groups with storage and simulated transport conditions conducted in accordance with ASTM D7386-16 and ASTM D4169-22, as applicable: Group 1a: No transport, 2-8°C storage uncontrolled humidity, 49-52-hour storage; Group 1b: Air/road transport, 2-8°C storage uncontrolled humidity, 49-52-hour storage; Group 2a: No transport, 20-24°C storage, uncontrolled humidity, 5-7-hour storage; Group 2b: Road transport, 20-24°C storage, uncontrolled humidity, 5-7-hour storage; Group 3a: Road transport, 38-40°C storage, 90% relative humidity, 5-7-hour storage; Group 3b: Air/road transport, 38-40°C storage, 90% relative humidity, 49-52-hour storage Following clotting, centrifugation, and storage for the BD MiniDraw™ SST™ tubes, testing was performed for selected chemistry analytes (Albumin, Alanine Aminotransferase (ALT), Alkaline Phosphatase (ALKP), Blood Urea Nitrogen, Chloride, Calcium, Cholesterol, Creatinine, High Density Lipoprotein (HDL), Low Density Lipoprotein (LDL), Sodium, Total Bilirubin (TBIL), Total Protein, Triglycerides) on the Siemens Atellica® Solution. Testing was performed for hemoglobin/hematocrit on the Sysmex XN-1000 in the BD MiniDraw™ H&amp;H Tubes. Visual quality (barrier formation, hemolysis) and tube integrity (physical damage, blood leakage, cap removal, tube fit into adaptor) were also evaluated. Mean biases and confidence intervals within the specific analyte clinical acceptance limit for each group comparison was considered clinically equivalent. Results Clinical equivalence was demonstrated for all analytes for each group comparison except ALKP, ALT, HDL, LDL, TBIL and hematocrit for the extreme transport/storage conditions for Group 3b versus Group 3a. Complete barrier formation with acceptable visual hemolysis was noted in all specimens post transport. Tube integrity was maintained post transport as well. Conclusions Analytes were not impacted across a wide range of temperature and transport conditions. However, exposing samples to extreme high temperature, high humidity conditions may affect analyte performance. This reiterates the importance of monitoring conditions to ensure accurate test results. No impact to visual observations of sample quality and tube physical integrity was noted at different storage and transportation extremes.

Does motivation and switching intention affect the trader's decision to choose Baitul Maal wa Tamwil as the intervening variable?

For traders and business actors who are motivated and interested in transitioning from conventional to sharia, the existence of Islamic microfinance institutions like Baitul Maal wa Tamwil (BMT) Sidogiri is a blessing. However, it's not solely a blessing; other factors like push-pull mooring (PPM) also play a role, demonstrating the confidence and motivation of business actors in BMT. The purpose of this study is to analyze the effect of push-pull mooring (PPM) mediating, motivation, and switching intention on traders' decisions to choose BMT. The variables in this study include independent variables, namely motivation (X1), and intentiswitching(X2), and the trader's decision to choose BMT (Y), whereas the mediation variable is push-pull mooring (Z). We conducted this research on MSME traders in Mempawah District, West Kalimantan Province, and monitored their decision to choose BMT from September 2023 until its completion. The primary data for this study was collected through questionnaires distributed to MSME traders in Mempawah Regency, West Kalimantan Province. We used the Warp Partial Least Square program for data collection in this study. PLS is a causal modeling approach whose goal is to maximize variable variability. The results of this study are The study concludes that motivation significantly and positively influences push-pull mooring, switching significantly and positively influences the trader's decision to choose BMT, and switching intention significantly and positively influences the trader's decision to choose BMT. Push Pull Mooring Mediates the Influence of Motivation on the Trader's Decision to Choose BMT. Push Pull Mooring Mediates the Effect of Switching Intention on the Trader's Decision to Choose BMT.

Examining community-level social vulnerability and emergency department use for people living with sickle cell disease in Michigan.

This study examined associations between emergency department (ED) visits and social vulnerability index (SVI) among Michigan's population with sickle cell disease (SCD) using data from the Michigan Sickle Cell Data Collection program (n=3658 in 2018). SVI was higher among census tracts where people with SCD resided (mean SVI=0.67; SD=0.27) compared to census tracts without SCD residents (mean SVI=0.39; SD=0.25; p<.001). For children with SCD, for every 0.1 increase in SVI score, the number of ED visits increased by 6% (IRR=1.061; SE=0.03; p=.038). Future research should investigate the association between SVI and ED use, at the community and household levels, to elucidate strategies to reduce ED use among children with SCD.

Debunking the One-size-fits-all Approach: Synergistic and Trade-off Effects of Collective Action on Household Food Security Among the Smallholder Farmers in Central Kenya

Collective action is important in ameliorating the negative externalities in agriculture to promote household food security (HFS). This study explored the effects of efficiency and livelihood collective action initiatives (CAIs) on HFS along the pathways of production and income. The efficiency CAIs pursue efficiency-enhancing collective activities including input sourcing and output marketing. The livelihood CAIs engage in household livelihood and resilience enhancing collective activities such as provision of credit and informal insurance, pooling savings and acquisition of assets. A multinomial endogenous treatment effects (METE) model and an ordered probit model were employed on cross-sectional data drawn from 532 households from Murang’a County in central Kenya. The results revealed significant differences in HFS between the efficiency and livelihood CAIs. The differences were accounted for by the variations in household and organizational characteristics that determine the capacity to leverage HFS benefits along the pathways of production and income. Both efficiency and livelihood CAIs showed a positive significant effect on HFS through production. The results further showed that income positively influenced HFS among the livelihood members contrary to efficiency CAIs that showed negative HFS effects. The HFS across the combined pathways of income and production was lower for the efficiency CAIs than the livelihood CAIs. This was mainly due to the trade-off income effects exhibited by the former and the synergies accrued from income and production on the latter. The findings suggest that the overall performance of both efficiency and livelihood CAIs in leveraging HFS from joint income and production remains tentative. Therefore, a one-size-fits-all collective action promotional policy and program design approaches for improved HFS outcomes are inadequate. The study suggests a portfolio of context-specific collective action policies and interventions that match the differences between the efficiency and livelihood CAIs and their links to HFS. The policies would confer potential synergies, spillover effects and complementarities in strengthening the synergies while mitigating the trade-offs along the income and production pathways between the efficiency and livelihood CAIs. There is a need to enhance access to information, extension and advisory services and ICT among the members of the livelihood CAIs to improve production. It is important to incentivize the non-farm livelihood-enhancing economic activities among the livelihood members to fill the household food gaps arising from low production. It is also important to establish collective action funds and micro-credit schemes with affordable interest rates. This would help to tap the opportunities for credit sourcing and pooling savings among the livelihood members while promoting collective input sourcing and output marketing among the efficiency CAIs.

Is there a case to reduce the duration of spat collector deployment for black-lip (Pinctada margaritifera) and winged (Pteria penguin) pearl oysters in the Fiji Islands?

Spat collection activities, targeting black-lip (Pinctada margaritifera) and winged (Pteria penguin) pearl oysters, support successful cultured round pearl and mabé pearl sectors in the Fiji Islands. To improve supply of pearl oysters for pearl production, a national spat collection program was developed based on standardised methodology, where commercially available spat collectors are deployed for 10–18 months. Research is now required to maximise the productivity of this program and optimising the duration of spat collector deployments is seen as a priority. This study considered whether there is justification to reduce the duration of spat collector deployments for black-lip and winged pearl oysters to less than 8 months. Spat collectors were deployed at multiple sites and then recovered after 5, 6, 7, or 8 months to examine the yield and size of resulting spat. While duration of spat collector deployment was important in determining the yield and size of harvested spat, it was not possible to generalise responses. Rather, conclusions were liable to vary over macro and micro spatial scales, depending on the target species. Such variability, coupled with the small size of spat at harvest, greatly limited the feasibility and rationale for reducing the duration of spat collector deployment to improve the supply of pearl oysters for pearl production. On this basis, we argue that there is no justification to modify the standardised methodology currently used within the national spat collection program in Fiji, where spat collectors are deployed for longer than 8 months.

PENGARUH KEMAJUAN TEKNOLOGI (SOSIAL MEDIA), LITERASI KEUANGAN TERHADAP MINAT INVESTASI MAHASISWA FAKULTAS EKONOMI DAN BISNIS UNIVERSITAS MATARAM

Technology is a symbol of progress in the development of the era. Technology changes the pattern of activities in a person's daily life. Many people use and manage their finances online because of its convenience, starting from savings, buying and selling transactions, In the field of investment, there is a lot of fraud due to lack of knowledge and people who are easily tempted by the returns offered, these reasons underlie the need for each individual to understand financial literacy before taking investment action. The purpose of this study was to examine how Social Media and financial literacy affect investment interest of FEB UNRAM students. With 96 respondents, this study used an associative quantitative methodology using a questionnaire for data collection and SPSS program for data processing. The results showed that financial knowledge and technology (Social Media) have a positive and substantial influence on investment interest. Furthermore, technology and financial literacy factors have an influence of 35% of the total influence, while the rest is influenced by other variables.

Improving the Lives of People with Sickle Cell Disease: Community Organizations and Epidemiologists Working Together

Abstract: Background: The Centers for Disease Control and Prevention’s Sickle Cell Data Collection (SCDC) program comprises multidisciplinary teams, which include community-based organizations. Partnering with community-based organizations (CBOs) is a novel approach to ensure that SCDC data are actionable. Objective: To better understand areas for mutual capacity building, we explored the relationships and dynamics between CBO and data teams within the SCDC program in 10 states. Methods: We conducted semi-structured interviews with CBO ( n = 13) and SCDC ( n = 10) participants and then categorized and compared text from each interview and across states. Six themes emerged. Lessons Learned: Transparency and trust are essential. Early CBO engagement and leadership are needed for trust and agreed upon priorities. Conclusions: Participants contextualized trust, the most prominent theme, within discussions of racism and health inequities. Relationships between the CBO and data teams bring hard data and human experience together for advocacy, education, improved care, and a platform for the SCD voice.

Pancreatic cancer screening is effective in individuals at risk with predisposing germline gene variants, but not in gene variant-negative familial pancreatic cancer families.

To evaluate the diagnostic yield of pancreatic cancer screening in individuals at risk (IAR) from familial pancreatic cancer (FPC) families with respect to the presence or absence of pathogenic germline variants predisposing to pancreatic adenocarcinoma (PDAC). In a 20 years period, IAR from FPC families were enrolled in a prospective screening program of the national case collection for FPC of Germany, including magnet resonance imaging (MRI) and endoscopic ultrasound (EUS). The diagnostic yield was analyzed regarding significant pancreatic lesions such as PDAC, high-grade pancreatic-intraepithelial-neoplasia (PanIN3) and intraductal-papillary-mucinous-neoplasia (IPMN) with high-grade dysplasia. Screening results were compared between carriers of pathogenic variants and variant-negative IAR. 337 IAR, including 74 (22%) variant-carriers and 263 IAR of variant-negative FPC families (mean age 49; standard deviation [SD]+8.9) were followed 64 (SD+55) months. IAR underwent 5.1 (SD+3.9) screening visits with 1733 MRI (5.1,SD+3.9 per IAR) and 728 EUS (2.2,SD+1.7 per IAR). In 12 (4%) cases, significant pancreatic lesions were detected, including 4 PDAC, 3 PanIN3 and 5 high-grade IPMN. Three of 4 IAR with PDAC died after a mean of 27months postoperatively, and one IAR is alive without evidence of disease after 31months. The diagnostic yield for significant lesions was 13.5% (10/74) for variant carriers compared to 0.8% (2/263) for IAR of variant-negative FPC families (p<0.001). Logistic regression analysis revealed that a negative variant status was almost always accompanied by the absence of a significant lesion over time with a negative predictive value of 99.2% (95% CI 97.3%-99.9%). The diagnostic yield seems to justify PDAC screening in IAR of FPC-families with pathogenic germline variants in PDAC predisposing genes, not in IAR of variant-negative families.

Prevalence, Mortality, and Access to Care for Chronic Kidney Disease in Medicaid-Enrolled Adults With Sickle Cell Disease in California: Retrospective Cohort Study.

Chronic kidney disease (CKD) is a significant complication in patients with sickle cell disease (SCD), leading to increased mortality. This study aims to investigate the burden of CKD in Medicaid-enrolled adults with SCD in California, examine differences in disease burden between male and female individuals, and assess mortality rates and access to specialized care. This retrospective cohort study used the California Sickle Cell Data Collection program to identify and monitor individuals with SCD. Medicaid claims, vital records, emergency department, and hospitalization data from 2011 to 2020 were analyzed. CKD prevalence was assessed based on ICD (International Classification of Diseases) codes, and mortality rates were calculated. Access to specialized care was examined through outpatient encounter rates with hematologists and nephrologists. Among the 2345 adults with SCD, 24.4% (n=572) met the case definition for CKD. The SCD-CKD group was older at the beginning of this study (average age 44, SD 14 vs 34, SD 12.6 years) than the group without CKD. CKD prevalence increased with age, revealing significant disparities by sex. While the youngest (18-29 years) and oldest (>65 years) groups showed similar CKD prevalences between sexes (female: 12/111, 10.8% and male: 12/101, 11.9%; female: 74/147, 50.3% and male: 34/66, 51.5%, respectively), male individuals in the aged 30-59 years bracket exhibited significantly higher rates than female individuals (30-39 years: 49/294, 16.7%, P=.01; 40-49 years: 52/182, 28.6%, P=.02; and 50-59 years: 76/157,48.4%, P<.001). During this study, of the 2345 adults, 435 (18.5%) deaths occurred, predominantly within the SCD-CKD cohort (226/435, 39.5%). The median age at death was 53 (IQR 61-44) years for the SCD-CKD group compared to 43 (IQR 33-56) years for the SCD group, with male individuals in the SCD-CKD group showing significantly higher mortality rates (111/242, 45.9%; P=.009) than female individuals (115/330, 34.9%). Access to specialist care was notably limited: approximately half (281/572, 49.1%) of the SCD-CKD cohort had no hematologist visits, and 61.9% (354/572) did not see a nephrologist during this study's period. This study provides robust estimates of CKD prevalence and mortality among Medicaid-enrolled adults with SCD in California. The findings highlight the need for improved access to specialized care for this population and increased awareness of the high mortality risk and progression associated with CKD.

Iron(III) Binding Properties of PF1140, a Fungal N-Hydroxypyridone, and Activity against Mycoplasma genitalium.

Mycoplasma genitalium is a sexually transmitted bacterium associated with urogenital disease syndromes in the US and worldwide. The global rise in drug resistance in M. genitalium necessitates the development of novel drugs to treat this pathogen. To address this need, we have screened extracts from a library of fungal isolates assembled through the University of Oklahoma Citizen Science Soil Collection Program. Analysis of one of the bioactive extracts using bioassay-guided fractionation led to the purification of the compound PF1140 (1) along with a new and several other known pyridones. The N-hydroxy pyridones are generally regarded as siderophores with high binding affinity for iron(III) under physiological conditions. Results from UV-vis absorption spectroscopy-based titration experiments revealed that 1 complexes with Fe3+. As M. genitalium does not utilize iron, we propose that the PF1140-iron complex induces cytotoxicity by facilitating the cellular uptake of iron, which reacts with endogenous hydrogen peroxide to produce toxic hydroxyl radicals.

Differential transcriptional invasion signatures from patient derived organoid models define a functional prognostic tool for head and neck cancer

Clinical outcome for patients suffering from HPV-negative head and neck squamous cell carcinoma (HNSCC) remains poor. This is mostly due to highly invasive tumors that cause loco-regional relapses after initial therapeutic intervention and metastatic outgrowth. The molecular pathways governing the detrimental invasive growth modes in HNSCC remain however understudied. Here, we have established HNSCC patient derived organoid (PDO) models that recapitulate 3-dimensional invasion in vitro. Single cell mRNA sequencing was applied to study the differences between non-invasive and invasive conditions, and in a collective versus single cell invading PDO model. Differential expression analysis under invasive conditions in Collagen gels reveals an overall upregulation of a YAP-centered transcriptional program, irrespective of the invasion mode. However, we find that collectively invading HNSCC PDO cells show elevated levels of YAP transcription targets when compared to single cell invasion. Also, collectively invading cells are characterized by increased nuclear translocation of YAP within the invasive strands, which coincides with Collagen-I matrix alignment at the invasive front. Using gene set enrichment analysis, we identify immune cell-like migratory pathways in the single cell invading HNSCC PDO, while collective invasion is characterized by overt upregulation of adhesion and migratory pathways. Lastly, based on clinical head and neck cancer cohorts, we demonstrate that the identified collective invasion signature provides a candidate prognostic platform for survival in HNSCC. By uncoupling collective and single cell invasive programs, we have established invasion signatures that may guide new therapeutic options.

Microbial ecology of protective isolation room: Air and Surfaces.

Healthcare-associated infections pose a significant public health burden, leading to morbidity, mortality, prolonged hospital stays, and substantial social and economic costs. Immunocompromised patients are at a heightened risk of nosocomial infections. This prospective study conducted at Mohammed VI University Hospital of Oujda aimed to assess the microbial ecology of surfaces and air in an immunosuppressed patient room compared to a double hospitalization room. Microbiological air purity tests were conducted employing both the sedimentation method and the collision method with the assistance of Microflow Alpha. The sedimentation method used Mueller Hinton with 5% human blood, facilitating the free fall of contaminated dust particles. The collection program employed was set for 10 minutes per 1 m3. For surface sampling, swabs were taken from a 25 cm2 surface. The swabs were immediately forwarded to the Microbiology Laboratory. We carried out both macroscopic and microscopic identification of colonies, followed by definitive biochemical identification using the BD phoenixTM system. Antibiotic susceptibility was assessed through agar diffusion on Muller Hinton medium coupled with the determination of the minimum inhibitory concentration. The results revealed a decreased bacterial count within the protective isolation room, in contrast to the standard hospital room. We noted the predominance of coagulase-negative Staphylococcus spp and Bacillus spp. Staphylococcus aureus and Aspergillus spp, common pathogens in healthcare-associated infections, were notably absent in the protective isolation room. The findings underline the pivotal role of hospital environments in the transmission of healthcare-associated infections. The protective isolation room demonstrated effective control of microbial contamination, with fewer and less resistant germs. The study highlighted the significance of air treatment systems in preventing the spread of opportunistic infections. Our study underscored the critical role of microbiological cleanliness in preventing nosocomial infections.

Mass General Brigham’s Patient-Reported Outcomes Measurement System: A Decade of Learnings

This article describes the strategies that leaders at the Mass General Brigham (MGB) health system have used in launching a standardized patient-reported outcome measure (PROM) collection program in 2012, a major step in the value-based transformation of health care. This article documents many benefits to patients, clinicians, and payers from the effective design, collection, and use of PROMs. These benefits include shared decision-making aligned to patients’ goals; improving patient expectations about their likely experiences and outcomes from treatment; empowering patients to self-monitor during recovery; facilitating communication between physicians and patients about what matters most to patients; enhancing treatment by having PROMs embedded in the patients’ electronic health record; and reducing disparities in access, treatment, and outcomes for previously underserved racial and ethnic groups. For payers, PROMs allow payments to be based on patient outcomes. By continuously answering each stakeholder’s “what’s in it for me” question, MGB has taken an important step toward building a learning health system to equitably achieve health outcomes that align with patients’ goals for their health. Working together, the MGB PROMs Program and the Brigham and Women’s Hospital’s Patient-Reported Outcomes, Value, and Experience Center, a transdisciplinary PROMs research hub, plan to continue their efforts to improve and expand the use of PROMs to accelerate the shift toward accountable, patient-centered care.