Scientific Data Research Articles

Eligibility of Asian and European registry patients for phase III trials in heart failure with reduced ejection fraction.

Traditional approaches to designing clinical trials for heart failure (HF) have historically relied on expertise and past practices. However, the evolving landscape of healthcare, marked by the advent of novel data science applications and increased data availability, offers a compelling opportunity to transition towards a data-driven paradigm in trial design. This research aims to evaluate the scope and determinants of disparities between clinical trials and registries by leveraging natural language processing for the analysis of trial eligibility criteria. The findings contribute to the establishment of a robust design framework for guiding future HF trials. Interventional phase III trials registered for HF on ClinicalTrials.gov as of the end of 2021 were identified. Natural language processing was used to extract and structure the eligibility criteria for quantitative analysis. The most common criteria for HF with reduced ejection fraction (HFrEF) were applied to estimate patient eligibility as a proportion of registry patients in the ASIAN-HF (N=4868) and BIOSTAT-CHF registries (N=2545). Of the 375 phase III trials for HF, 163 HFrEF trials were identified. In these trials, the most frequently encountered inclusion criteria were New York Heart Association (NYHA) functional class (69%), worsening HF (23%), and natriuretic peptides (18%), whereas the most frequent comorbidity-based exclusion criteria were acute coronary syndrome (64%), renal disease (55%), and valvular heart disease (47%). On average, 20% of registry patients were eligible for HFrEF trials. Eligibility distributions did not differ (P=0.18) between Asian [median eligibility 0.20, interquartile range (IQR) 0.08-0.43] and European registry populations (median 0.17, IQR 0.06-0.39). With time, HFrEF trials became more restrictive, where patient eligibility declined from 0.40 in 1985-2005 to 0.19 in 2016-2022 (P=0.03). When frequency among trials is taken into consideration, the eligibility criteria that were most restrictive were prior myocardial infarction, NYHA class, age, and prior HF hospitalization. Based on 14 trial criteria, only one-fifth of registry patients were eligible for phase III HFrEF trials. Overall eligibility rates did not differ between the Asian and European patient cohorts.

Do we accurately measure what we consume?

Understanding how consumption patterns affect the environment and shape well-being hinges on the rationale that the data collected on what is consumed, who consumes it, and where it is consumed are indeed accurate. To identify these consumption patterns and recommend corresponding policies, researchers and policy makers often rely on national surveys. Studies have explored the accuracy of individual surveys and the level of agreement across surveys of the same type (e.g. household expenditures), but no studies have compared representative national surveys measuring consumption in different ways. This study compares household consumption measured as expenditures and as material consumption (i.e. physical units) to assess how well we currently measure what we consume. We use multiple rigorous, national surveys to estimate meat consumption, household energy use, and private automobile use in the United States, with consumption profiles parsed by affluence, race/ethnicity, and education. Our results indicate that commonly used surveys may not accurately track important aspects of household consumption. For meat consumption, which included 30 consumption profiles detailing the consumption patterns across different demographic characteristics and meat types (e.g. kilograms beef consumed/capita for Caucasians), there is considerable disagreement between data sources for 20 profiles. By contrast, national surveys accurately measure household energy and transport (disagreement for four profiles). Our findings indicate that national surveys more accurately measure consistently tracked, standardized consumables like electricity than irregularly tracked, variable goods such as food. These results cast doubt on studies that use national surveys to draw conclusions about the how the environmental impacts of food, and, potentially, other goods (e.g. manufactured goods) vary across demographic groups. Overcoming this challenge will necessitate new surveys, updating legacy databases, and harnessing breakthroughs in data science.

GreatBlue: a 55-Pound Vertical-Takeoff-and-Landing Fixed-Wing sUAS for Science; Systems, Communication, Simulation, Data Processing, Payloads, Package Delivery, and Mission Flight Performance

As small, uncrewed systems (sUAS) grow in popularity and in number, larger and larger drone aircraft will become more common–up to the FAA limit of 55 pound gross take-off weight (GTOW) and beyond. Due to their larger payload capabilities, longer flight time, and better safety systems, autonomous systems that maximize CFR 14 Part 107 flight drone operations regulations will become more common, especially for operations such as imagery or other data collection which scale well with longer flight times and larger flight areas. In this new paper, a unique all-electric 55-pound VTOL transition fixed-wing sUAS specifically engineered for scientific data collection named “GreatBlue” is presented, along with systems, communications, scientific payload, data collection and processing, package delivery payload, ground control station, and mission simulation system. Able to fly for up to 2.5 hours while collecting multispectral remotely-sensed imagery, the unique GreatBlue system is shown, along with a package delivery flight example, flight data from two scientific data collection flights over California almond fields and a Utah Reservoir are shown including flight plan vs. as-flown.

Quantitative Risk Assessment of Wind-Supported Transmission of Highly Pathogenic Avian Influenza Virus to Dutch Poultry Farms via Fecal Particles from Infected Wild Birds in the Environment

A quantitative microbial risk assessment model was developed to estimate the probability that the aerosolization of fecal droppings from wild birds in the vicinity of poultry farms would result in the infection of indoor-housed poultry with highly pathogenic avian influenza virus (HPAIv) in the Netherlands. Model input parameters were sourced from the scientific literature and experimental data. The availability of data was diverse across input parameters, and especially parameters on the aerosolization of fecal droppings, survival of HPAIv and dispersal of aerosols were uncertain. Model results indicated that the daily probability of infection of a single poultry farm is very low, with a median value of 7.5 × 10−9. Accounting for the total number of poultry farms and the length of the bird-flu season, the median overall probability of at least one HPAIv-infected poultry farm during the bird-flu season is 2.2 × 10−3 (approximately once every 455 years). This is an overall estimate, averaged over different farm types, virus strains and wild bird species, and results indicate that uncertainty is relatively high. Based on these model results, we conclude that it is unlikely that this introduction route plays an important role in the occurrence of HPAIv outbreaks in indoor-housed poultry.

Size normalizing planktonic Foraminifera abundance in the water column

AbstractPlanktonic Foraminifera have been collected from the water column with different plankton sampling devices equipped with nets of various mesh sizes, which impedes direct comparison of observed quantifications. Here, we use data on the community size structure of planktonic Foraminifera to assess the impact of mesh size on the measured abundance (ind m−3) of planktonic Foraminifera. We use data from the FORCIS database (Chaabane et al., 2023, Scientific Data 10: 354) on the global ocean at different sampling depths over the past century. We find a global cumulative increase in abundance with size, which is best described using a Michaelis–Menten function. This function yields multiplication factors by which one size fraction can be normalized to any other size fraction equal to or larger than 100 μm. The resulting size normalization model is calibrated over a range of different depth intervals, and validated with an independent dataset from various depth ranges. The comparison to Berger's (1969, Deep. Res. Oceanogr. Abstr. 16: 1–24) equivalent catch approach shows a significant increase in the predictive skill of the model. The new size normalization scheme enables comparison of Foraminifera abundance data sampled with plankton nets of different mesh sizes, such as compiled in the FORCIS database. The correction methodology may be effectively employed for various other plankton groups such as diatoms and dinoflagellates.

Old-growth mapping in Patagonia’s evergreen forests must integrate GEDI data to overcome NFI data limitations and to effectively support biodiversity conservation

Structural metrics from the NASA Global Ecosystem Dynamics Investigation (GEDI) are vital to support monitoring, restoration and protection of high biodiversity spots. The Chilean Patagonia is home of pristine and unique ecosystems where GEDI data can provide knowledge on structure and biomass and expand the current limitation in Patagonia on field measurements and open lidar data. Conservation efforts are ramping up across our study area in the Aysén Region. Ongoing and future conservation efforts precise from unbiased estimates of forest carbon stocks to value and to protect forest biodiversity. We evaluate GEDI structural metrics and biomass estimates in the evergreen forests of the Chilean Patagonia using National Forest Inventory (NFI) data and unmanned aerial vehicle (UAV) lidar mapping to assess aboveground biomass density (AGBD) across six conservation projects. Estimates from GEDI ranged between 186 and 255 Mg ha-1. Both AGBD distributions for NFI plots and the gridded map were similarly centered as both converged in the median value (100 Mg ha-1). However, the NFI gridded map turned asymptotic after 200 Mg ha-1, showing the lack of representation in the NFI sampling of dense high-C forests, whereas GEDI estimates were able to sense these areas of old-growth forests. The distribution of GEDI tracks, the scale extension of the projects and the available NFI information explained the differences between using GEDI samples and the NFIcalibrated solution using UAV-lidar. Our results showed the limitations of the Chilean NFI over steep locations and uplands where old-growth forests dominate, and where only GEDI can depict structural metrics and reliable estimates of ADGB and forest carbon. This study is highly relevant to support conservation projects in Patagonia using publicly available GEDI data science, and to enforce ambitious legislation in Chile designed to protect biodiversity and for which quantification, reporting and verification of forest carbon stocks is crucial.

Optimization of logistics cargo tracking and transportation efficiency based on data science deep learning models

With the digital transformation of the logistics industry, smart logistics algorithms have become a core technology to improve efficiency and reduce costs. This paper reviews the development history of traditional logistics technology and discusses the key role of technologies such as the Internet of Things, big data analysis, artificial intelligence, and automation in logistics technology innovation. It focuses on the application of intelligent logistics algorithms in path optimization, intelligent scheduling, data mining and prediction, and intelligent warehousing. To solve the problem of inconsistency between training and testing objectives, this paper proposes DRL4Route, a deep reinforcement learning-based path optimization framework, and designs the DRL4Route-GAE model. These research results provide important support to further promote the intelligent development of the logistics industry.

Empowering communities through data literacy: a qualitative study exploring Indigenous Australian perceptions, engagement and understanding of data

Data literacy is an essential competency needed to use data to inform decisions and participate in contemporary society. Importantly, in the context of Indigenous health it enables engagement with health services and facilitates health management, Indigenous data sovereignty and Indigenous data governance. However, while Indigenous data sovereignty and Indigenous data governance are gaining momentum globally, there are no mechanisms for understanding or enhancing data literacy within Indigenous communities. To explore this, a research project was co-designed between the QUT Centre for Data Science and the Aboriginal and Torres Strait Islander Community Health Service Brisbane (ATSICHS), a community-controlled health service in Queensland Australia, to provide insights into the current state of data literacy, community perceptions of data, and identify community suggestions for enhancing data literacy. Furthermore, by utilizing an Indigenist research design, the project ensured Aboriginal and Torres Strait Islander Peoples’ ways of knowing, being, and doing were privileged and prominent throughout research design, data collection and analysis. The qualitative study included 20 semi-structured interviews with Brisbane Aboriginal and/or Torres Strait Islander Peoples who had accessed or engaged with ATSICHS. This paper presents insights into Aboriginal and Torres Strait Islander Peoples’ perspectives on data and data literacy, which may benefit community-controlled organizations and other Indigenous communities within Australia and around the world.

Social Media as a Lens for Citizen Science: Investigating Visitor Contributions in a Forest Recreational Area

The primary challenge in collecting biodiversity information using citizen science is to encourage a diverse range of people to participate. This is crucial in fostering a Nature Positive society. Social media approaches have the potential to engage not only nature lovers but also a wider range of citizens, including those indifferent to nature. However, current understanding of the traits of individuals who contribute to widely prevalent social media platforms is limited and insufficient. This study focuses on individuals who contribute to a forest recreational area and the photos they share on a popular social media platform; it sheds light on the untapped potential of social media as a source of citizen science data and contributor sources. We developed a taxonomy of 22 classifications for 1066 photographs that illustrate human–ecosystem interactions and identified the relationship between these subjects and the history of social media activities of the 136 photo contributors. Our findings indicate that different behavioral styles exist among different types of visitors regarding their posting behavior and associated forest recreation types. This can encourage future contributions to the recruitment of citizen scientists and the collection of biodiversity information at small spatial scales.

Developments in the study of Chinese herbal medicine's assessment index and action mechanism for diabetes mellitus.

In traditional Chinese medicine (TCM), based on various pathogenic symptoms and the 'golden chamber' medical text, Huangdi Neijing, diabetes mellitus falls under the category 'collateral disease'. TCM, with its wealth of experience, has been treating diabetes for over two millennia. Different antidiabetic Chinese herbal medicines reduce blood sugar, with their effective ingredients exerting unique advantages. As well as a glucose lowering effect, TCM also regulates bodily functions to prevent diabetes associated complications, with reduced side effects compared to western synthetic drugs. Chinese herbal medicine is usually composed of polysaccharides, saponins, alkaloids, flavonoids, and terpenoids. These active ingredients reduce blood sugar via various mechanism of actions that include boosting endogenous insulin secretion, enhancing insulin sensitivity and adjusting key enzyme activity and scavenging free radicals. These actions regulate glycolipid metabolism in the body, eventually achieving the goal of normalizing blood glucose. Using different animal models, a number of molecular markers are available for the detection of diabetes induction and the molecular pathology of the disease is becoming clearer. Nonetheless, there is a dearth of scientific data about the pharmacology, dose-effect relationship, and structure-activity relationship of TCM and its constituents. Further research into the efficacy, toxicity and mode of action of TCM, using different metabolic and molecular markers, is key to developing novel TCM antidiabetic formulations.

Biosynthesis and Pharmacological Activities of the Bioactive Compounds of White Mulberry (Morus alba): Current Paradigms and Future Challenges

Traditional natural products have been the focus of research to explore their medicinal properties. One such medicinally important plant is the white mulberry, Morus alba, widely distributed in the Asian subcontinent. It is one of the most cultivated species of mulberry tree and has attracted more focus from researchers because of its abundance in phytochemicals as well as multipurpose uses. The leaves, fruits and other parts of the white mulberry plant act as a source of valuable bioactive compounds like flavonoids, phenolic acids, terpenoids and alkaloids. These secondary metabolites have manifold healthy uses as they possess antioxidant, anti-inflammatory, antidiabetic, neutrotrophic, and anticancer properties. Despite the increasing scientific interest in this plant, there are very few reviews that highlight the phytochemistry and biological potential of white mulberry for biomedical research. To this end, this review elaborates the phytochemistry, biosynthetic pathways and pharmacological activities of the glycoside flavonoids of Morus alba. A comprehensive analysis of the available literature indicates that Morus alba could emerge as a promising natural agent to combat diverse conditions including diabetes, cancer, inflammation and infectious diseases. To achieve such important objectives, it is crucial to elucidate the biosynthesis and regulation mechanisms of the bioactive compounds in white mulberry as well as the multifaceted pharmacological effects attributed to this plant resource. The present review paper is intended to present a summary of existing scientific data and a guide for further research in the phytochemistry and pharmacology of white mulberry. Further, a biosynthetic pathway analysis of the glycoside flavonoid in mulberry is also given. Lastly, we discuss the pros and cons of the current research to ensure the prudent and effective therapeutic value of mulberry for promoting human and animal health.

Children picturing their own worlds: Using photovoice to amplify children's voice in sociological research.

This research note highlights an emerging transdisciplinary research method-photovoice-and why it is particularly suited for sociological studies of children and youth. Traditional social science data collection methods can be limited in their ability to capture both the depth and breadth of childhood experiences and children's perceptions of their experiences. We describe an emerging method, photovoice, that is used more frequently in other disciplines, and its suitability for sociologically studying youth and children. We describe the limitations of traditional social science methods and how photovoice can help overcome some of these limitations. Photovoice engages participants as lived experts who contribute to both the data collection and analysis in an individual and collective manner. Through taking photos and discussing their meaning, participants can share abstract feelings and discuss sensitive topics in an imaginative format and express themselves creatively. We describe how previous research has used photovoice to work with youth from vulnerable circumstances and those who have experienced trauma as well as demonstrate how photovoice is well situated to bolster the tenets of sociological research.

An Assessment of Changes in the Thermal Environment during the COVID-19 Lockdown: Case Studies from the Greenland and Norwegian Seas

The COVID-19 lockdown had a significant impact on human activities, reducing anthropogenic heat and CO2 emissions. To effectively assess the impact of the lockdown on the thermal environment, we used the sliding paired t-test, which we improved from the traditional sliding t-test by introducing the paired t-test for sliding statistical tests, to test the abrupt change in the thermal environment. Furthermore, an additive decomposition model and wavelet analysis method were used to analyze the characteristics of trend and irregular change, coherence, and phase difference of the time series data with respect to the thermal environment. We chose the Greenland Sea and the Norwegian Sea, regions highly sensitive to changes in climate and ocean circulation, as case studies and used remote sensing data of the sea surface temperature (SST) and the atmospheric CO2 concentration data obtained from the Goddard Earth Sciences Data and Information Services Center from January 2015 to December 2021 for the analysis. The results show that although the annual spatial mean SST in 2020 is lower than the mean of all 7 years in most areas of the two seas, there is no evidence of a significant mutation in the decrease in the SST during the lockdown in 2020 compared with the temperatures before, according to the sliding paired t-test. The analysis of the irregular components of the monthly mean SST decomposed by an additive decomposition model also does not show the anomalously low SST during the lockdown in 2020. In addition, the lockdown had almost no impact on the increasing trend of CO2 concentration. The wavelet analysis also shows that there is no obvious anomaly in coherence or phase difference between the periodic variation of the SST and the CO2 concentrations in 2020 compared with other years. These results suggest that the direct effect of the COVID-19 lockdown on the thermal environment of the study area could be negligible.

Development, validation and implementation of an augmented multi-well, multi-target quantitative PCR-HPV genotyping analysis through software automation, data science and artificial intelligence.

The value of HPV testing for cervical cancer screening is well established, where its use as primary screening option or as reflex test after atypical cytology results has recently gained wide acceptance. The importance of full genotyping and viral load determination has been demonstrated to enhance the clinical understanding of the viral infection progression during follow-up or after treatment, thereby providing clinicians with supplementary tools for optimized patient management.In this study a new analysis method for the RIATOL quantitative PCR assay was developed, validated and implemented in the laboratory of clinical molecular pathology at A.M.L. (Sonic Healthcare, Belgium), under national accreditation and following the international ISO guidelines. It presents the successful validation of a high throughput, multi-target HPV analysis method, with enhanced accuracy on both qualitative and quantitative end-results. This is achieved by software standardization and automation of PCR curve analysis and interpretation, using data science and artificial intelligence (DS/AI). Moreover, the user-centric functionality of the platform was demonstrated to enhance both staff training and routine analysis workflows, thereby saving time and laboratory personnel resources.Overall, the integration of the FastFinder plugin semi-automatic analysis algorithm with the RIATOL qPCR assay proved to be a remarkable advancement in high throughput HPV quantification, with demonstrated capability to provide highly accurate clinical-grade results and to reduce manual variability and analysis time.

Drag force and filtration performance of square-frame ichthyoplankton sampling net

A constant-depth ichthyoplankton sampler (CDIS) is widely employed for quantitative sampling surveys, yet challenges related to sampling distortion due to unstable tows of the CDIS persist. The drag force of the square-frame sampling net is pivotal in maintaining the dynamic stability of the CDIS during horizontal towing. This study delves into the hydrodynamics and filtration performance of square-frame sampling nets through flume-tank experiments and numerical simulations. The results show that the drag coefficient for the square-frame ichthyoplankton sampling net initially decreases and then increases as the solidity ratio rises from 0.3 to 0.7. It becomes greater as the net length becomes shorter and the net mouth area becomes larger. A response model for the drag force for the square-frame sampling net is proposed that is capable of accurate predictions. The results also reveal that the flow decelerates at the net mouth and gradually accelerates in the posterior section of the net, and the filtration efficiency increases as the net length and mouth area increase but decreases slightly as the solidity ratio increases. Our study provides vital scientific data for reference and methodologies for designing or modifying a square-frame CDIS, fostering enhanced stability and accuracy in ichthyoplankton surveys.

Low-cost saw/sinus-tooth-shaped circular microstrip patch antenna for in-space and satellite applications

Antennas operating in S and C bands are crucial in space satellite applications due to their high bandwidth, which facilitates the swift transmission of large data volumes from space vehicles to Earth. These bands are less affected by atmospheric disturbances and exhibit lower noise levels, ensuring uninterrupted and reliable communication between spacecraft and Earth centers. They are essential for satellite-based remote sensing, analyzing surface properties, transmitting high-resolution images, scientific data, and other information. Additionally, they are used for spacecraft control and navigation, enabling precise mission operations. This study emphasizes user-friendly production antennas with different geometries and distinct feeding techniques, demonstrating various design implementations using CST Microwave Studio software. Innovative manufacturing methods such as 3D printing PLA substrates and using copper tape for antenna elements were explored to optimize costs and production processes. Precise cutting of antenna radiation geometries was achieved using the Cricut machine. Experimental validation through reflection coefficient (S11) measurements with a handheld vector network analyzer confirmed the practical application of theoretical foundations. The study’s novelty lies in examining unconventional materials like PLA filament for antenna substrates, exploring fractalization theory for enhancing bandwidth, and discussing advancements in material science with flexible filaments like TPU. These contributions offer insights into user-friendly antenna production, innovative manufacturing techniques, and theoretical explorations in antenna design, enhancing the efficiency and effectiveness of space satellite communication systems.

The Evolution of Science and Regulation of Dietary Supplements: Past, Present, and Future

Dietary supplement use in the United States is widespread and increasing, especially among certain population groups, such as older Americans. The science surrounding dietary supplements has evolved substantially over the last few decades since their formal regulation in 1994. Much has been learned about the mechanisms of action of many dietary supplement ingredients, but the evidence on their health effects is still building. As is true of much nutrition research, there are many studies that point to health effects, but not all are at the level of scientific evidence (e.g., randomized controlled interventions), rigor, or quality needed for definitive statements of efficacy regarding clinical endpoints. New technologies and approaches are being applied to the science of dietary supplements, including nutrigenomics and microbiome analysis, data science, artificial intelligence, and machine learning – all of which can elevate the science behind dietary supplements. Products can contain an array of bioactive compounds derived from foods as well as from medicinal plants, which creates enormous challenges in data collection and management. Clinical applications, particularly those aimed at providing personalized nutrition options for patients, have become more sophisticated as dietary supplements are incorporated increasingly into clinical practice and self-care. The goals of this paper are to provide historical context for the regulation and science of dietary supplements, identify research resources, and suggest some future directions for science in this field.

The Gut Microbiota-Brain Axis: A New Frontier in Alzheimer's Disease Pathology.

Dr. Aloysius Alzheimer, a German neuropathologist and psychiatrist, recognized the primary instance of Alzheimer's disease (AD) for a millennium, and this ailment, along with its related dementias, remains a severe overall community issue related to health. Nearly fifty million individuals worldwide suffer from dementia, with Alzheimer's illness contributing to between 60 and 70% of the instances, estimated through the World Health Organization. In addition, 82 million individuals are anticipated to be affected by the global dementia epidemic by 2030 and 152 million by 2050. Furthermore, age, environmental circumstances, and inherited variables all increase the likelihood of acquiring neurodegenerative illnesses. Most recent pharmacological treatments are found in original hypotheses of disease, which include cholinergic (drugs that show affective cholinergic system availability) as well as amyloid-accumulation (a single drug is an antagonist receptor of Nmethyl D-aspartate). In 2020, the FDA provided approval on anti-amyloid drugs. According to mounting scientific data, this gut microbiota affects healthy physiological homeostasis and has a role in the etiology of conditions that range between obesity and neurodegenerative disorders like Alzheimer's. The microbiota-gut-brain axis might facilitate interconnection among gut microbes as well as the central nervous system (CNS). Interaction among the microbiota-gut system as well as the brain occurs through the "two-way" microbiota-gut-brain axis. Along this axis, the stomach as well as the brain develop physiologically and take on their final forms. This contact is constant and is mediated by numerous microbiota-derived products. The gut microbiota, for instance, can act as non-genetic markers to set a threshold for maintaining homeostasis or getting ill. The scientific community has conducted research and found that bowel dysbiosis and gastrointestinal tract dysregulation frequently occur in Alzheimer's disease (AD) patients. In this review, the effects of the microbiota- gut-brain axis on AD pathogenesis will be discussed.

Thrombotic Thrombocytopenic Purpura: 100 Years of Research on Moschcowitz’s Syndrome

In the 100 years since Dr. Eli Moschcowitz reported the first case of thrombotic thrombocytopenic purpura (TTP), there has been remarkable awareness and progress in the diagnosis and management of this rare blood disorder. This progress initially was the result of careful clinical observations followed by well thought-out therapeutic interventions, with dual goals of both improving outcomes and discerning the pathophysiology of TTP. The discovery of the ADAMTS13 protease set in motion efforts to more accurately define the specific etiologies of thrombotic microangiopathies (TMA) based on objective, scientific data rather than clinical characterizations alone. This accurate differentiation led to better and more revealing clinical trials and advancements in the treatment of TTP and other TMA. Further advances followed and included improvements in immune suppressive therapy and targeted therapies of immune-mediated TTP (iTTP) (caplacizumab) and congenital TTP (cTTP) (recombinant ADAMTS13). The longitudinal study of TTP patients revealed the unexpected risk for long-term complications in both iTTP and cTTP patients in remission. Ongoing studies aim to further understand the prevalence, mechanisms, and appropriate screening for these mood disorders, neurocognitive deficits, and cardiovascular complications that develop at remarkably high rates, and are associated with a decreased life expectancy. These discoveries are a result of the collaborative efforts of investigators worldwide that have been fostered by the frequent interactions of investigators via the International TTP Working Group meetings and TMA workshops held regularly at international meetings. These efforts will support the rapid pace of discovery and improved understanding of this rare disease.

P-717 Add-ons availability and quality of online information provided by Brazilian IVF clinics

Abstract Study question How do Brazilian fertility clinic websites advertise four IVF add-ons: assistedhatching (AH), preimplantation genetic testing for aneuploidies (PGT-A), ERA and sperm DNA fragmentation test. Summary answer Available information, about ivf add-ons in Brazil, on researched websites is heterogeneous and is not evidence-based according to the last published recommendations. What is known already Over 1 billion people worldwide use online resources to obtain health-related information. People struggling with infertility are increasingly turning to online resources for infertility-related content and social support. “Add-on” procedures are actively promoted on some fertility clinic websites as means to improve IVF success rates. However, the actual contribution of these interventions to IVF success rates remains debatable. ESHRE has recently issued 42 recommendations were formulated on the use of add-ons in IVF. At present, no study has evaluated the type and quality of the information provided on the Brazilian IVF clinics’ websites regarding the merits of “add-ons. Study design, size, duration Prospective evaluation of the availability and quality of information on four common add-ons provided by IVF clinics in the southeast of Brazil between October-November 2023. Clinics were identified using the national registry (SisEmbrio) as well as through manual online search. As only public online available information was used no ethical approval was necessary. Statistical analyses were restricted to descriptive of the frequency of each add-on and frequency of claims made in relation to their use. Participants/materials, setting, methods One reviewer took screenshots of the included clinic pages and claims and a second reviewer double-checked everything. The folowing information was colletced: availability of of the four add-ons; information on the effectiveness on: implanation rate(IR), pregnancy rate (PR) or live-birth rate (LBR); information on the scientifc uncertainty of the use of add-on and possible negative impact; for PGT-A if the clinic informed that the data obtained should be confirmed by prenatal diagnostic testing. Main results and the role of chance The websites of 122 IVF clinics were included. Nine clinics had no website or were offline. PGT-A was the most frequent available add-on (n = 77; 68%) but only two of them (2,5%) informed on PR. There was no information on IR nor LBR. Thirteen clinics (16,8%) acknowledged it could have adeverse effects but only one mentioned the scientifc uncertainty related to its use. Forty (35%) websites displayed AH with 7 reporting on possible negative effects but none disclosed success rates (PR, IR or LBR). Eight clinics admitted AH had uncertain benefits and seven noted possible negative impact. The sperm DNA fragmentation test was presented in 37 (33%) websites but none reported on potential adverse effects nor success rates in terms of PR, IR nor LBR. No website provided information on the uncertainty of the benefit of the test. The ERA-test was advertised in 28 (25%) websites with no information on its benefits on sucess rates. Three clinics advised it could have a negative impact and six agreed its effectiveness was unclear. The cost was never pesented for any of the add-ons researched in accordance to national regulations. Of note, 36 websites advertised other add-ond such as MSOME, ZYMOT and endometrial scrathcing. Limitations, reasons for caution The study was restricted to 122 clinics websites in the southeast of Brazil. Evalaution was restricted to four commons add-ons and the quality of the information provided could not be assessed as the clinics follow no specific regulation on how to advertise scientifc information to their patiens and general public. Wider implications of the findings The information provided by Brazilian IVF clinics could be misleading. The use of add-ons is surrounded by scientific uncertainly related to their benefits and cost-effectiveness therfeore it is of utmost importance that clinics reviewt heir websites and offer sound scientific data to patients and the general public as well. Trial registration number Not applicable