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Project management digitalisation of the clinical research at the University Medical Centre
Get PDFObjective: The digital tool REDCap (Research Electronic Data Capture) was implemented at the University Medical Centre Ljubljana (UMCL) with the goal of digitalising and streamlining research processes. This study aimed to assess the efficiency and transparency of clinical research following the implementation of REDCap. Methods: The implementation of REDCap for funded research began in 2021. It comprised four key steps: (I) the initial creation of Central Research Registry, followed by additional functionalities including (II) the establishment of the Central Database for ’Pre-Contract Activities’ for clinical trials(III) the integration of Reporting on Research Progress directly into the Central Research Registryand (IV) the development of a semi-automated Workflow for internal agreements. Results: Between 2021 and 2023, UMCL established a Central Research Registry using REDCap, transitioning from paper-based to digital data collection for over 2,500 research projects. These projects included clinical trials, national and international studies, as well as academic research. In addition to serving as a registry, the central system provided comprehensive data management, streamlined communication, and enhanced collaboration among stakeholders in clinical trial research at UMCL. The implementation of REDCap significantly reduced administrative burden and shortened the time required to finalise clinical trial agreements from 202 to 147 days. It also improved coordination, transparency, and real-time monitoring of research activities, facilitating more efficient research execution. Additionally, the digitalisation of internal agreements processes between researchers and stakeholders within UMCL improved coordination and expedited research execution timelines. Furthermore, REDCap enabled real-time monitoring of research progress, further contributing to the efficiency and transparency of research activities. Conclusion: The digitalisation of research processes using REDCap improved the organisation and execution of research, leading to greater efficiency and transparency, reduced administrative workload, and enhanced collaboration. This approach contributed to higher-quality research outcomes and ultimately benefited patient care
Influence of pancreas transection with cavitron ultrasonic surgical aspirator (CUSA) on incidence of postoperative pancreatic fistula after pancreatoduodenectomy (PANCUT)
Get PDFBackground: Complications after pancreatoduodenectomy occur in up to 40% of patients. Postoperative pancreatic fistula (POPF) remains the most common complication after pancreatoduodenectomy and is associated with increased postoperative mortality. The cavitron ultrasonic surgical aspirator (CUSA) is a surgical instrument commonly used in liver and neurosurgery. The CUSA selectively dissects tissue parenchyma, leaving blood vessels and bile ducts undamaged, which are then selectively ligated or clipped. Only a few studies have investigated the relationship between the transection of pancreatic tissue with CUSA and the formation of POPF. The results were inconsistent and were published before the updated ISGPS consensus on the definition of POPF. Methods: The PANCUT study is a randomised controlled trial initiated at the Department of Abdominal Surgery, University Medical Centre Ljubljana. The aim of the study is to determine whether precise dissection of the pancreatic tissue with CUSA reduces the incidence of POPF. Patients scheduled for pancreatoduodenectomy will be randomly assigned to either the experimental group, in which the pancreatic tissue will be dissected with CUSA, or the control group, in which pancreas will be conventionally transected with scalpel. A total of 180 patients will be included in the study. The primary endpoint is the formation of POPF. Secondary endpoints include operation time, amount of intraoperative blood loss, postoperative infectious complications, postoperative bleeding, length of hospital stay and mortality. Discussion: To our knowledge, the PANCUT study is the first randomized controlled trial to investigate the role of CUSA in the transection of pancreatic tissue during pancreatoduodenectomy. Trial registration: ClinicalTrials.gov NCT06135012. Registered on 18 November 2023
Principles for the fire performance of external wall systems
Get PDFRecent high-profile fires involving combustible façades have exposed significant gaps in both the understanding and regulation of external wall systems. Modern façade designs frequently employ polymers as insulation and/or laminated composite materials that, while improving energy efficiency, can inadvertently create pathways for vertical fire spread. Thus, there is a need to establish fundamental principles for evaluating the fire spread performance of these systems. Drawing on notable incidents, it is shown how uncontrolled flame spread can defeat compartmentation strategies, compromise occupant egress, and overwhelm firefighting efforts. Extending on previous studies, a performance-based approach to fire spread is proposed, examining four levels of relevance: material properties, product characteristics, assembly configuration, and overall building context. Key factors include combustibility, ventilation effects, and real-world variables (e.g., building characteristics). Case studies of testing methods illustrate both utility and limitations in capturing metrics relevant to façade design. Ultimately, it is advocated that there is an urgent need for rigorous, tailored assessment protocols supported by professional competence, thereby ensuring that complex external wall systems can be designed and managed to balance fire safety with sustainability and safety objectives
Getting through or overcoming it? Errors and linguistic variants in the use of multi-word units in independent text production in primary and secondary school
Get PDFV prispevku opišemo težave pri rabi večbesednih enot (VBE), ki jih imajo učenci in dijaki pri samostojnem tvorjenju besedil. Pri tem izhajamo iz učiteljskih popravkov v korpusu Šolar 3.0 in jezikovnih odločitev pri izdelavi učne množice Šolar-Eval. V raziskavi smo nabor problemov kategorizirali glede na tip alternativne jezikovne ubeseditve (izrazne, leksikalne in kontekstualne), tip VBE (stalne zveze, frazeološke enote, kolokacije, skladenjske zveze) ter glede na to, ali gre za variantno ali napačno ubeseditev. V jeziku je stvari mogoče povedati na različne načine, zato tudi ni enoznačnih popravkov, hkrati pa se spekter besednozvezne problematike razteza od napak na eni strani, ki so razmeroma redke in imajo za posledico nerazumevanje, napačno razumevanje oz. z vidika rojenega govorca nepričakovano izbiro, do variant na drugi strani, pri katerih obstaja (še) druga ubeseditev istega sporočila. Prepoznavanje omenjenih ubeseditev omogoča oblikovanje povratne informacije v smislu pravilnejše, slogovno in kolokacijsko ustreznejše ubeseditve, kot tudi prepoznavanje alternativnih ubeseditev, ki v jeziku delujejo bolj ali manj enakovredno, kar je mogoče ugotavljati s pomočjo referenčnega korpusa. Ključne besede: popravljanjeThis paper describes the difficulties students encounter when using multiword expressions (MWEs) in independent text production. Our analysis is based on teachers‘ corrections in the Developmental corpus Šolar 3.0 (Arhar Holdt et al. 2022) and linguistic decisions made during the development of the evaluation dataset for automated error correction Šolar-Eval (Gantar et al. 2023). We categorize the identified issues in the use of MWEs according to the type of alternative linguistic expression (formal, lexical, and contextualGeeraerts 1994), the type of MWE (fixed expressions, phraseological units, collocations, syntactic constructions), and whether the expression is a variant or an error. Language allows multiple ways of expressing the same idea, which means that corrections are not always unambiguous. At the same time, the spectrum of MWE issues ranges from errors – relatively rare occurrences that lead to misunderstanding, misinterpretation, or unexpected choices from a native speaker‘s perspective, to variants, where an alternative phrasing of the same message exists. Recognizing these different expressions enables the formulation of feedback that offers not only more correct, stylistically appropriate, and collocationally suitable phrasing but also alternative expressions that in the language function more or less equivalently. In school writing, there is a noticeable intentional use of more expressive linguistic choices to enrich the text and enhance narrative vividness, whereas teacher‘s corrections tend to favor more neutral expressions and simplification (e. g., go through – endure)
Generativna umetna inteligenca v inkluzivnih razredih: spodbujanje socialne interakcije, personaliziranega učenja in metakognitivnih spretnosti
Get PDFIn this study, the researcher conducted a systematic literature review to investigate the pioneering potential of generative artificial intelligence (GAI) tools and technologies to cater to diverse learning needs in inclusive classrooms. The research was based on social constructivist, human–machine learning collaborative learning, and metacognitive theories and was designed to address three major concerns: the social hindrances faced by students with diverse learning needs during collaborative tasks in inclusive classrooms, the inability of students with learning difficulties’ to participate equally when using GAI tools, and the potential implications of GAI tools for students struggling with metacognitive skill development. The investigation was based on a thematic analysis of 20 scholarly research articles drawn from Scopus, Web of Science, and Google Scholar following PRISMA. Commonalities in the data were identified using colour coding techniques. The results revealed that GAI tools improve communication skills by breaking down cultural and linguistic barriers, which gives neurodivergent learners equitable opportunities to participate in peer interactions. GAI tools can increase reflective thinking, encourage creative problem-solving, and aid in developing structured and planned groups within a stipulated time. GAI tools effectively reduce cognitive load, improve focus, facilitate goal-driven learning, and provide personalised assistance through adaptive scaffolding that addresses learners’ multimodal needs. These tools help in deskilling by providing scaffolding and fostering gradually increasing independence. Further research can be conducted to explore the long-term impact of GAI on students and open up new possibilities for addressing the limitations of current GAI technology in inclusive pedagogy.Namen te študije je proučiti pionirski potencial orodij in tehnologij generativne umetne inteligence (GUI) v inkluzivnih razredih z raznolikimi učenci. Raziskava temelji na teorijah socialnega konstruktivizma, teoriji sodelovanja med človekom in strojem ter metakognitivni teoriji in obravnava tri glavna vprašanja: socialne ovire med sodelovalnimi nalogami, s katerimi se soočajo učenci v inkluzivnih razredih, nezmožnost učencev z učnimi težavami, da bi enakovredno sodelovali pri uporabi orodij GUI, in potencialne posledice uporabe orodij GUI za učence z raznolikimi učnimi potrebami, ki imajo težave z razvojem metakognitivnih spretnosti. Raziskava je bila izvedena s tematsko analizo 20 znanstvenih člankov iz uglednih podatkovnih zbirk. Ugotovljene skupne značilnosti vzorca so označene z uporabo tehnik barvnega kodiranja. Rezultati kažejo, da orodja GUI izboljšujejo komunikacijske spretnosti, saj odpravljajo kulturne in jezikovne ovire, kar nevrodivergentnim učencem nudi boljše možnosti za interakcijo z vrstniki. Orodja GUI lahko izboljšajo refleksivno mišljenje, spodbujajo ustvarjalno reševanje problemov ter pomagajo pri strukturiranih in načrtovanih časovno omejenih skupinskih dejavnostih. Orodja GUI učinkovito zmanjšujejo kognitivno obremenitev in s tem izboljšujejo osredotočenost, omogočajo ciljno usmerjeno učenje in zagotavljajo prilagojeno pomoč, ki upošteva učenčeve večplastne potrebe. Ta orodja pomagajo premostiti pomanjkanje spretnosti in omogočajo postopno samostojnost. V nadaljevanju se raziskava osredotoča na dolgoročne učinke in najnovejše možnosti za odpravljanje omejitev trenutne tehnologije GUI v inkluzivni pedagogiki
Gene therapy of rare diseases as a milestone in medicine
Get PDFGene therapy has transitioned from a long-awaited promise to a clinical reality, offering transformative treatments for rare congenital diseases and certain cancers, which have a significant impact on patients’ lives. Current approaches focus on gene replacement therapy, either in vivo or ex vivo, mostly utilizing viral vectors to deliver therapeutic genes into target cells. However, refining these techniques is essential to overcome challenges and complications associated with gene therapy to ensure long-term safety and efficacy. Slovenia has witnessed significant advancements in this field since 2018, marked by successful gene therapy trials and treatments for various rare diseases. Significant strides have been made in the field of gene therapy in Slovenia, treating patients with spinal muscular atrophy and rare metabolic disorders, including the pioneering work on CTNNB1 syndrome. Additionally, immune gene therapy, exemplified by IL-12 adjuvant therapy for cancer, has been a focus of research in Slovenia. Through patient-centred initiatives and international collaborations, researchers in Slovenia are advancing preclinical research and clinical trials, paving the way for accessible gene therapies. Establishing clinical infrastructure and genomic diagnostics for rare diseases is crucial for gene therapy implementation. Efforts in this regard in Slovenia, including the establishment of a Centre for Rare Diseases, Centre for the Technologies of Gene and Cell Therapy, and rapid genomic diagnostics, demonstrate a commitment to comprehensive patient care. Despite the promises of gene therapy, challenges remain, including cost, distribution, efficacy, and long-term safety. Collaborative efforts are essential to address these challenges and ensure equitable access to innovative therapies for patients with rare diseases
Prevalence of familial hypercholesterolemia in Pakistan
Get PDFBackground: Familial hypercholesterolemia (FH) is an inherited disorder that causes elevated LDL-C levels leading to premature cardiovascular disease but remains underdiagnosed. This study aims to determine the prevalence of FH in Pakistan using data from multiple laboratory networks and compare it with other counties of the region. Methods: The study analyzed lipid profile data from two large laboratory networks in Pakistan, applying Make Early Diagnosis to Prevent Early Death (MEDPED) LDL-C criteria for the general population to identify FH cases. A pooled prevalence estimate of prevalence of FH in Pakistan was calculated by combining the data of studies reporting prevalence in Pakistan. A systematic review was conducted to assess FH prevalence in South and Southeast Asian countries. Results: Analysis of 545,087 individuals (Median age 45 years, 58.2% males) identified 2,911 FH cases [0.55%, 95% confidence interval (CI): 0.53–0.57%), equivalent to a prevalence of 1:182. Pooled analysis with a previous Pakistani study, totaling 1,533,393 subjects, estimated the overall FH prevalence in Pakistan at 1:273 (95% CI: 0.21–0.64%). Prevalence decreased with age, being highest in th
Value of optical genome mapping (OGM) for diagnostics of rare diseases
Get PDFOptical genome mapping (OGM) is a novel method enabling the detection of structural genomic variants. The method is based on the laser image acquisition of single, labeled, high-molecular-weight DNA molecules and can detect structural genomic variants such as translocations, inversions, insertions, deletions, duplications, and complex structural rearrangements. We aim to present our experience with OGM at the Clinical Institute of Genomic Medicine, University Medical Centre Ljubljana, Slovenia. Since its introduction in 2021, we have used OGM for the testing of facioscapulohumeral muscular dystrophy 1, characterization and resolution of variants identified by other technologies such as microarrays, exome and genome next-generation sequencing, karyotyping, as well as testing of rare disease patients in whom no genetic cause could be identified using these methods. We present an example family case of two previously undiagnosed male siblings with an overlapping clinical presentation of thrombocytopenia, obesity, and presacral teratoma. After karyotyping, microarray analysis and next-generation sequencing, by using OGM, a maternally inherited cryptic translocation t(X18)(q27.1q12.2) was identified in both brothers. Despite an extended segregation analysis, based on strictly applied ACMG criteria and ClinGen guidelines, the identified translocation remains a variant of unknown significance. Despite the remaining limitations of OGM, which will hopefully be resolved by improvements in databases of known benign SV variation and the establishment of official guidelines on the clinical interpretation of OGM variants, our work highlights the complexity of the diagnostic journey, including this novel method, in rare disease cases
Hardness of dry-cured ham as a factor of consumer choice and its relationship to sensory acceptability
Get PDFPodatkovni arhiv dejavnosti Slovenskega kulturnega društva Lipa Zadar (2004–2024)
No full textTa podatkovni set vsebuje strukturirane podatke, ki se nanašajo na dvajsetletno delovanje Slovenskega kulturnega društva Lipa Zadar (SKD Lipa Zadar). Podatki vključujejo informacije, zbrane v okviru priprave monografije, arhivskega dela društva ter analize društvene dejavnosti.
Podatkovni set je namenjen raziskovalcem, kulturnim institucijam, arhivistom, družboslovcem, etnologom in drugim, ki se ukvarjajo s področji: (1) kulturne dejavnosti v manjšinskih skupnostih, (2) slovenska manjšina na Hrvaškem, (3) društvena zgodovina, (4) migracijske in identitetne študije (5) primerjalne analize kulturnih društev