Orphanet Journal of Rare Diseases has published a paper seeking to estimate the epidemiology of osteogenesis imperfecta (OI) in Spain: ‘Current situation of osteogenesis imperfecta in Spain: results from a Delphi study’. https://lnkd.in/eZ7THnPR. As well as an estimate of the prevalence and incidence of OI in Spain, the results complement the available evidence of the burden of the disease, management, and unmet need. The study also highlights the priorities for improving the management of the condition: availability of consensus documents and treatment guidelines, the establishment of multidisciplinary management throughout a person’s life, and the approval of the new therapies. Thank you to the clinician experts in OI who contributed real life experience and data from Spanish hospitals, supported the development of the study questionnaire and validated the final results. #osteogenesisimperfecta #OI
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Knowing more about OI EPI
Orphanet Journal of Rare Diseases has published a paper seeking to estimate the epidemiology of osteogenesis imperfecta (OI) in Spain: ‘Current situation of osteogenesis imperfecta in Spain: results from a Delphi study’. https://lnkd.in/eZ7THnPR. As well as an estimate of the prevalence and incidence of OI in Spain, the results complement the available evidence of the burden of the disease, management, and unmet need. The study also highlights the priorities for improving the management of the condition: availability of consensus documents and treatment guidelines, the establishment of multidisciplinary management throughout a person’s life, and the approval of the new therapies. Thank you to the clinician experts in OI who contributed real life experience and data from Spanish hospitals, supported the development of the study questionnaire and validated the final results. #osteogenesisimperfecta #OI
BMC, research in progress
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ARTICLE ABOUT SPANISH OI POPULATION Orphanet Journal of Rare Diseases has published a paper seeking to estimate the epidemiology of osteogenesis imperfecta (OI) in Spain: ‘Current situation of osteogenesis imperfecta in Spain: results from a Delphi study’. https://lnkd.in/eZ7THnPR As well as an estimate of the prevalence and incidence of OI in Spain, the results complement the available evidence of the burden of the disease, management, and unmet need. The study also highlights the priorities for improving the management of the condition: availability of consensus documents and treatment guidelines, the establishment of multidisciplinary management throughout a person’s life, and the approval of the new therapies. #osteogenesisimperfecta
Orphanet Journal of Rare Diseases has published a paper seeking to estimate the epidemiology of osteogenesis imperfecta (OI) in Spain: ‘Current situation of osteogenesis imperfecta in Spain: results from a Delphi study’. https://lnkd.in/eZ7THnPR. As well as an estimate of the prevalence and incidence of OI in Spain, the results complement the available evidence of the burden of the disease, management, and unmet need. The study also highlights the priorities for improving the management of the condition: availability of consensus documents and treatment guidelines, the establishment of multidisciplinary management throughout a person’s life, and the approval of the new therapies. Thank you to the clinician experts in OI who contributed real life experience and data from Spanish hospitals, supported the development of the study questionnaire and validated the final results. #osteogenesisimperfecta #OI
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PhD students Sam Brinker (Epidemiology) and Kaity Coleman (Plant Pathology) brought new insights, connecting old concepts to this review of the way that impact assessment and project evaluation can change the way that scientists do science. The extended format of review articles allows space for a synthesis that creates novelty from interdisciplinary thinking. We use Koestler's ideas about hierarchical systems, White's view of science as an activity rather than a domain, Long's concept of the Ecology of Games, Hirsch's perspective on positional wealth, and the combined view of the inevitable emergence of unintended consequences offered by Goodhart's Law and Campbell's Law to explain how the context for publicly-funded research, the incentives created by the necessity of evaluation, and the scarcity of resources to do it, can lead to it not generating its intended outcomes. https://lnkd.in/gsmri4Av
Theories for Understanding the Effect of Impact Assessment and Project Evaluation on the Practice of Science
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We have just started this new LinkedIn page covering the news from the **methods program** of the Julius Center for Health Sciences and Primary Care. Follow us for the latest developments on research methods for health: statistics, data science, AI, evidence synthesis, epidemiology, ethics, health economics, qualitative research and more
Julius Center Research Program Methodology | UMC Utrecht | LinkedIn
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Adjunct Professor in the Department of Pediatrics, School of Medicine, UC San Diego, Lead Scientist, Advisor
So proud to see our article published today in Frontiers in Cellular and Infection Microbiology: https://lnkd.in/g88GPJe3 Fungal infections caused by Aspergillus fumigatus are a global health problem that affects approximately 8 million people. Using a fungal co-culture cell model, our research team demonstrates the loss of the barrier function of the bronchial epithelial cell layer and identified gliotoxin as a key player. The normal function of the CFTR anion channel protein - which is defective in the genetic disease cystic fibrosis - can provide a protective role. #fungalinfection #cysticfibrosis
Frontiers | Publisher of peer-reviewed articles in open access journals
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🏥 Interested in methodological research? 📋 Have a look at the new page of the Julius Center Research Program Methodology | UMC Utrecht!
We have just started this new LinkedIn page covering the news from the **methods program** of the Julius Center for Health Sciences and Primary Care. Follow us for the latest developments on research methods for health: statistics, data science, AI, evidence synthesis, epidemiology, ethics, health economics, qualitative research and more
Julius Center Research Program Methodology | UMC Utrecht | LinkedIn
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Assistant Professor in Computer Engg. Dept., Artificial Intelligence in Health care, Deep Learning, Cancer and Disease Diagnosis, Data science, Web, Android, and Game Development, Cyber Security, Malware, ChatGpt
Alhamdulillah, I am grateful to share that I have successfully published research articles in the renowned and highly prestigious Springer journal "Complex & Intelligent Systems" This journal holds the esteemed #JSR #SCI Q1 ranking #Engineering and #Information Systems, #impactFactor 5.8 signifying its position as one of the top journals. #artificialintelligence #deeplearning #Malaria #detection #healthcare #aihealthcare #diagnostics #imageprocessing #deeplearningai #analysis #Engineering
(PDF) Malaria Parasitic Detection using a New Deep Boosted and Ensemble Learning Framework
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Senior Clinical Development Vaccine Safety Lead at CEPI, Fellow of the International Society of Pharmacovigilance
It is amazing how you can randomly find little gems that you never knew existed. This short paper, from a very known voice in the field of epidemiology, Kenneth Rothman. Misconception 1. There is a hierarchy of study designs; randomized trials provide the greatest validity, followed by cohort studies, with case–control studies being least reliable. Misconception 2. An essential element of making valid generalizations from a study is that the study subjects constitute a representative sample of a target population. Misconception 3. If a term that denotes the product of two factors in a regression model is not statistically significant, then there is no biologic interaction between those factors. Misconception 4. When categorizing a continuous variable, a reasonable scheme for choosing category cut-points is to use percentile-defined boundaries, such as quartiles or quintiles of the distribution Misconception 5. One should always report P values or confidence intervals that have been adjusted for multiple comparisons Misconception 6. Significance testing is useful and important for the interpretation of data.
Six Persistent Research Misconceptions - Journal of General Internal Medicine
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Prepare yourself to be shocked - some of these misconceptions are firmly held beliefs in the field of clinical research. We should be approaching the appraisal of data with a critical eye and common sense. All too often people accept top line conclusions without question, but this paper really makes us think again. Thanks Rebecca Chandler for sharing this this gem.
Senior Clinical Development Vaccine Safety Lead at CEPI, Fellow of the International Society of Pharmacovigilance
It is amazing how you can randomly find little gems that you never knew existed. This short paper, from a very known voice in the field of epidemiology, Kenneth Rothman. Misconception 1. There is a hierarchy of study designs; randomized trials provide the greatest validity, followed by cohort studies, with case–control studies being least reliable. Misconception 2. An essential element of making valid generalizations from a study is that the study subjects constitute a representative sample of a target population. Misconception 3. If a term that denotes the product of two factors in a regression model is not statistically significant, then there is no biologic interaction between those factors. Misconception 4. When categorizing a continuous variable, a reasonable scheme for choosing category cut-points is to use percentile-defined boundaries, such as quartiles or quintiles of the distribution Misconception 5. One should always report P values or confidence intervals that have been adjusted for multiple comparisons Misconception 6. Significance testing is useful and important for the interpretation of data.
Six Persistent Research Misconceptions - Journal of General Internal Medicine
link.springer.com
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The Saturn Programme, a Real World Evidence, collaborative, multinational program aimed at supporting the assessment of new medicines in osteogenesis imperfecta, has been presented on 7th May in Rome at the meeting of the Italian ERN BOND - European Reference Network on Rare Bone Diseases. Piloted by the IRCCS Istituto Ortopedico Rizzoli in Bologna, Italy, the Programme will shortly involve other leading OI sites in some European Countries. A collaboration between existing dataset allows identification of common key data variable set. Through the inputs of relevant stakeholders and key research questions, aggregate natural history data output may be reached which allow a better understanding of OI clinical history and help new medicines’ assessment by Regulatory and HTA bodies and payers. Many burning topics on rare bone diseases have been also discussed in Rome. Among others, the role of ERN Bond within the Italian National Plan for Rare Diseases, the CPMS 2.0 project and the ‘Pronti a Salpare’ project supported by the Rizzoli Institute. Some ongoing trials in rare bone disease have also been presented. The meeting also coincided with the first publication from the SATURN Programme, which can be viewed in the Orphanet Journal of Rare Diseases here https://lnkd.in/dv62u8Ub #OsteogenesisImperfecta #OI
BMC, research in progress
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