scholarly journals Development of a Dashboard for Rare Diseases – A Technical Case Report

2021 ◽  
Author(s):  
Liz A. Leutner ◽  
Franziska Bathelt ◽  
Brita Sedlmayr ◽  
Martin Sedlmayr ◽  
Michele Zoch
Keyword(s):  
Rare Diseases ◽  
Requirements Analysis ◽  
Added Value ◽  
University Hospital ◽  
User Friendliness ◽  
High Quality Research ◽  
Use Of Data ◽  
Lack Of Information ◽  
High Level ◽  
The University

About 30 million people suffer from a rare disease in Europe. Those affected face a variety of problems. These include the lack of information and difficult access to scientific knowledge for physicians. For a higher visibility of rare diseases and high-quality research, effective documentation and use of data are essential. The aim of this work is to optimize the processing, use and accessibility of data on rare diseases and thus increase the added value from existing information. While dashboards are already being used to visualize clinical data, it is unclear what requirements are prevalent for rare diseases and how these can be implemented with available development tools so that a highly accepted dashboard can be designed. For this purpose, based on an analysis of the current situation and a requirements analysis, a prototype dashboard for the visualization of up-to-date key figures on rare diseases was developed at the University Hospital Carl Gustav Carus in Dresden. The development was based on the user-centered design process in order to achieve a high-level user-friendliness. The requirements analysis identified parameters that stakeholders wanted to see, focusing primarily on statistical analyses. The dashboard handles the automated calculation of statistics as well as their preparation and provision. The evaluations showed the prototypical dashboard would be considered valuable and used by potential users. This work demonstrates that stakeholders are interested in access to prepared information and exemplifies a way to implement it. The dashboard can increase the usage of existing information in terms of a higher accessibility and thus improve the knowledge about rare diseases.

scholarly journals Prevalence and association of PCR ribotypes of Clostridium difficile isolated from symptomatic patients from Warsaw with macrolide-lincosamide-streptogramin B (MLSB) type resistance

2006 ◽  
Vol 55 (2) ◽  
pp. 207-213 ◽  
Author(s):  
Hanna Pituch ◽  
Jon S. Brazier ◽  
Piotr Obuch-Woszczatyński ◽  
Dorota Wultańska ◽  
Felicja Meisel-Mikołajczyk ◽  
...  
Keyword(s):  
Clostridium Difficile ◽  
University Hospital ◽  
Erythromycin Resistance ◽  
Toxin B ◽  
Pcr Ribotyping ◽  
Methylase Gene ◽  
High Level ◽  
The University ◽  
Antibiotic Associated Diarrhoea ◽  
Level Resistance

Isolates (79 in total) of Clostridium difficile obtained over a 2 year period from 785 patients suspected of having C. difficile-associated diarrhoea (CDAD) and being hospitalized in the University Hospital in Warsaw were characterized by toxigenicity profile and PCR ribotyping. Furthermore, their susceptibility to clindamycin and erythromycin was determined. Among the 79 C. difficile isolates, 35 were classified as A+B+, 1 as A+B+CDT+, 36 as A−B+ and 7 as A−B−. A total of 21 different PCR ribotypes was detected. Two main A+B+ strains circulated in our hospital: ribotype 014 and ribotype 046. Unexpectedly, the predominant PCR ribotype was type 017, a known A−B+ strain, and this accounted for about 45·5 % of all isolates cultured from patients with CDAD. Isolates belonging to PCR ribotype 017 were found in cases from epidemics of antibiotic-associated diarrhoea in the internal and surgery units. High-level resistance (MIC⩾256 mg l−1) to clindamycin and erythromycin was found in 39 (49 %) of the C. difficile isolates. Interestingly, 34 (94 %) of macrolide-lincosamide-streptogramin B (MLSB) type resistance strains did not produce toxin A, but produced toxin B and were A−B+ ribotype 017. Thirty-seven of the high-level resistance strains harboured the erythromycin-resistance methylase gene (ermB). C. difficile isolates (2/29) that had high-level clindamycin and erythromycin resistance, and belonged to PCR ribotype 046, were ermB negative. These investigations revealed that the predominant C. difficile strain isolated from symptomatic patients hospitalized in University Hospital in Warsaw was MLSB-positive clindamycin/erythromycin-resistant PCR ribotype 017.

scholarly journals A Novel Complex Mutant β-Lactamase, TEM-68, Identified in a Klebsiella pneumoniae Isolate from an Outbreak of Extended-Spectrum β-Lactamase-Producing Klebsiellae

2000 ◽  
Vol 44 (6) ◽  
pp. 1499-1505 ◽  
Author(s):  
Janusz Fiett ◽  
Andrzej Pałucha ◽  
Beata Mia˛czyńska ◽  
Maria Stankiewicz ◽  
Hanna Przondo-Mordarska ◽  
...  
Keyword(s):  
Klebsiella Pneumoniae ◽  
University Hospital ◽  
Pediatric Hospitals ◽  
Extended Spectrum ◽  
Novel Complex ◽  
High Level ◽  
Inhibitor Resistance ◽  
The University ◽  
Level Resistance

ABSTRACT Twenty-two Klebsiella pneumoniae and two K. oxytoca extended-spectrum β-lactamase (ESBL)-producing isolates were collected in 1996 from patients in two pediatric wards of the University Hospital in Wrocław, Poland. Molecular typing has revealed that the K. pneumoniae isolates represented four different epidemic strains. Three kinds of enzymes with ESBL activity (pI values of 5.7, 6.0, and 8.2) were identified. The pI 6.0 β-lactamases belonged to the TEM family, and sequencing of thebla TEM genes amplified from representative isolates revealed that these enzymes were TEM-47, previously identified in K. pneumoniae isolates from pediatric hospitals in Łódź and Warsaw. One of the TEM-47-producing strains from Wrocław was very closely related to the isolates from the other cities, and this indicated countrywide spread of the epidemic strain. The pI 5.7 β-lactamase was produced by a single K. pneumoniae isolate for which, apart from oxyimino-β-lactams, the MICs of β-lactam–inhibitor combinations were also remarkably high. Sequencing revealed that this was a novel TEM β-lactamase variant, TEM-68, specified by the following combination of mutations: Gly238Ser, Glu240Lys, Thr265Met, and Arg275Leu. The new enzyme has most probably evolved from TEM-47 by acquiring the single substitution of Arg275, which before was identified only twice in enzymes with inhibitor resistance (IR) activity. TEM-68 was shown to be a novel complex mutant TEM β-lactamase (CMT-2) which combines strong ESBL activity with relatively weak IR activity and, when expressed inK. pneumoniae, is able to confer high-level resistance to a wide variety of β-lactams, including inhibitor combinations. This data confirms the role of the Arg275Leu mutation in determining IR activity and documents the first isolation of K. pneumoniae producing the complex mutant enzyme.

Use of Electronic Books among Postgraduate Students in the Department of Information Studies at the University of Zululand, South Africa

Mousaion ◽  
2020 ◽  
Vol 38 (2) ◽  
Author(s):  
Tlou Maggie Masenya ◽  
Nqubeko Siyanda Ngema
Keyword(s):  
South Africa ◽  
Computer Literacy ◽  
Quantitative Research ◽  
Electronic Books ◽  
Academic Institutions ◽  
Postgraduate Students ◽  
Lack Of Information ◽  
Information Studies ◽  
High Level ◽  
The University

The advancement of digital technologies has improved the information environment with more information being available and disseminated in electronic format. Electronic books have been used in the academic institutions, and academic users have recognised their potential in supporting scholarships. However, the increase in the acquisition of electronic books has brought about changes to the interface of academic institutions in the provision of electronic books to users. The aim of the study was to determine the use of electronic books among postgraduate students in the Department of Information Studies at the University of Zululand, South Africa. The study used the quantitative research method underpinned by a survey research design for the data collection. The findings show a high level of awareness of electronic books that are available at the institution and that are used by postgraduate students in learning and research. Postgraduate students access and use electronic books daily through some of the popular databases such as EBSCO Discovery Service, EBSCOhost and Emerald. However, most of the postgraduate students encountered many challenges that hinder the effective use of and access to electronic books, for example, limited access to the internet, the lack of information technology skills and the lack of training on the use of electronic books. The study recommends information and digital computer literacy training, continuous professional development, and workplace learning workshops on the access to and use of electronic books.

scholarly journals The use of integrative and complementary practices in leprosy-related pain is influenced by sociodemographic, clinical and care factors: A case-control study

2021 ◽  
Vol 10 (8) ◽  
pp. e24210817306
Author(s):  
Amanda Francielle Santos ◽  
Josimari Melo de Santana ◽  
Francisco Prado Reis ◽  
José Rodrigo Santos Silva ◽  
Alexrangel Henrique Cruz Santos ◽  
...  
Keyword(s):  
Pain Relief ◽  
Quantitative Research ◽  
Demographic Data ◽  
University Hospital ◽  
Cross Sectional ◽  
Medical Specialties ◽  
Lack Of Information ◽  
Pain Scales ◽  
The University ◽  
Control Study

Purpose: Study in order to evaluate the use of complementary and integrative practices for leprosy-related pain. Cross-sectional, descriptive and quantitative research carried out at the University Hospital and Medical Specialties Center of Sergipe between February and June 2019. Methods: 170 people with leprosy pain contributed socio-demographic data, resources used for pain relief and factors that hinder adherence to practices. For pain assessment, the Verbal Pain Scales, Descriptor Scales and the tester Douler Neuropathic 4 were used. Results: Neuropathic pain was present in 119 individuals (70.0%) and the pain was assessed as severe in 85 (50.0%). Half of them (86; 50.6%) reported using pain relief: restricted diet (50, 29.4%), exercise (32, 18.8%), massage (31, 18.2%), among others. The factors that most influenced adherence to practices: lack of information (65, 38.2%), economic reasons (36, 21.2%), subjective characteristics (34, 20.0%). Women (45, 60.0%, p = 0.0427), patients with the borderline clinical form of the patient (23, 74.2%, p = 0.0014), reporting a burning sensation on the skin (70, 55, 5%, p = 0.0437), and those monitored by a physiotherapist (11, 84.6%, p = 0.0178) showed greater adherence to the practices. Conclusion: It is concluded that several complementary and integrative practices are being used for pain relief, but sociodemographic, clinical and care factors can influence adherence to these interventions.

scholarly journals Disparity between High Satisfaction and Severe Pain in Patients after Caesarean Section: A Prospective Observational-Controlled Investigation

2018 ◽  
Vol 2018 ◽  
pp. 1-5
Author(s):  
Thomas Hesse ◽  
Andreas Julich ◽  
James Paul ◽  
Klaus Hahnenkamp ◽  
Taras I. Usichenko
Keyword(s):  
Quality Of Life ◽  
Rating Scale ◽  
Pharmacological Therapy ◽  
University Hospital ◽  
Surgical Patients ◽  
Patients Satisfaction ◽  
High Satisfaction ◽  
High Level ◽  
The University

Objectives. Recent advances in the treatment of postoperative pain (POP) have increased the quality of life in surgical patients. The aim of this study was to examine the quality of POP management in patients after CS in comparison with patients after comparable surgical procedures. Methods. This was a prospective observational analysis in patients after CS in comparison with the patients of the same age, who underwent comparable abdominal gynaecological surgeries (GS group) at the university hospital. A standardised questionnaire including pain intensity on the Verbal Rating Scale (VRS-11), incidence of analgesia-related side effects, and incidence of pain interference with the items of quality of life and patients’ satisfaction with the treatment of POP was used. Results. Sixty-four patients after CS reported more pain on movement than the patients after GS (N=63): mean 6.1 versus 3.6 (VRS-11; P<0.001). The patients after CS reported less nausea (8 versus 41%) and vomiting (3 versus 21%; P<0.001) and demonstrated better satisfaction with POP treatment than the patients after GS: 1.4 (0.7) versus 1.7 (0.7) (mean (SD); VRS-5; P=0.02). Conclusion. The disparity between the high level of pain and excellent satisfaction with POP treatment raises the ethical and biomedical considerations of restrictive pharmacological therapy of post-CS pain.

scholarly journals Prevalence and Antimicrobial Resistance of Enterococcus Species: A Retrospective Cohort Study in Italy

Antibiotics ◽  
2021 ◽  
Vol 10 (12) ◽  
pp. 1552
Author(s):  
Mariarosaria Boccella ◽  
Biagio Santella ◽  
Pasquale Pagliano ◽  
Anna De Filippis ◽  
Vincenzo Casolaro ◽  
...  
Keyword(s):  
Antimicrobial Resistance ◽  
Treatment Guideline ◽  
Multidrug Resistant ◽  
Resistance Rate ◽  
University Hospital ◽  
Clinical Samples ◽  
Enterococcus Species ◽  
Enterococcus Spp ◽  
High Level ◽  
The University

Antimicrobial resistance represents one of the main threats to healthy ecosystems. In recent years, among the multidrug-resistant microorganisms responsible for nosocomial infections, the Enterococcus species have received much attention. Indeed, Enterococcus have peculiar skills in their ability to acquire resistance genes and to cause severe diseases, such as endocarditis. This study showed the prevalence and antimicrobial resistance rate of Enterococcus spp. isolated from clinical samples, from January 2015 to December 2019 at the University Hospital “San Giovanni di Dio e Ruggi d’Aragona” in Salerno, Italy. A total of 3236 isolates of Enterococcus faecalis (82.2%) and Enterococcus faecium (17.8%) were collected from urine cultures, blood cultures, catheters, respiratory tract, and other samples. Bacterial identification and antibiotic susceptibility were performed with VITEK 2. E. faecium showed a high resistance rate against ampicillin (84.5%), ampicillin/sulbactam (82.7%), and imipenem (86.7%), while E. faecalis showed the highest resistance rate against gentamicin and streptomycin high level, but both were highly sensitive to such antibiotics as tigecycline and vancomycin. Studies of surveillance are an important tool to detect changes in the resistance profiles of the main pathogens. These antimicrobial susceptibility patterns are necessary to improve the empirical treatment guideline of infections.

scholarly journals Study to Investigate the Knowledge of Rare Diseases among Dentists, Orthodontists, Periodontists, Oral Surgeons and Craniomaxillofacial Surgeons

2020 ◽  
Vol 18 (1) ◽  
pp. 139
Author(s):  
Annemarie Kühne ◽  
Johannes Kleinheinz ◽  
Jochen Jackowski ◽  
Jeanette Köppe ◽  
Marcel Hanisch
Keyword(s):  
Rare Diseases ◽  
The Self ◽  
University Hospital ◽  
Self Assessment ◽  
Oral And Maxillofacial Region ◽  
Self Assessments ◽  
Level Of Knowledge ◽  
Level Of Significance ◽  
General Dentists ◽  
The University

Fifteen percent of the 5000 to 8000 rare diseases (RDs) can manifest in the oral and maxillofacial region. Little attention has been paid to the care situation of people with RDs in dentistry. Hence, the aim of this study was to assess the level of knowledge about RDs among dentists at a university hospital (DUs) compared to dentists with different professional backgrounds and among general dentists, specialist dentists and DUs in the chamber district of Westfalen-Lippe. Moreover, self-assessment of the level of knowledge was evaluated. A questionnaire was designed, which was made available digitally via a link. A random sample of 1500 dentists, specialist dentists, and oral- and craniomaxillofacial surgeons from the membership of the Dental Association of Westfalen-Lippe, and all dentists, specialist dentists, and oral- and craniomaxillofacial surgeons working at the University Dental Hospitals Münster and Witten/Herdecke, were invited to participate to our study. Differences in the level of knowledge between DUs and non-DUs and differences between DUs, general dentists, and specialist dentists were tested via two-sided Fischer’s exact tests. Differences between the three groups of self-assessment of the level of knowledge and the self-assessment of how sufficient their own knowledge about RDs is were tested via two-sided Kruskal–Wallis tests. The global level of significance was controlled by the Bonferroni method. A total of 267 questionnaires were completed, of which 64.0% were answered by general dentists, 25.5% by specialist dentists and 10.5% by DUs. DUs had a significant higher level of knowledge about RDs (adjusted p = 0.012) compared to non-DUs and achieved higher scores (median = 16.5 points) than general (median = 13 points) and specialist dentists (median = 13 points) (p = 0.001). In the self-assessments, the differences were not significant (p > 0.05). In conclusion, most participants showed no or little knowledge about RDs, and DUs had a significant higher level of knowledge than non-university dentists.

scholarly journals Antimeningococcal Vaccination Coverage Among Healthcare Workers in an Italian University Hospital

2021 ◽  
Vol 9 ◽  
Author(s):  
Vittorio Gattini ◽  
Marco Napoletano ◽  
Alessandra Bonotti ◽  
Aldo Mignani ◽  
Francesca Cosentino ◽  
...  
Keyword(s):  
Vaccination Coverage ◽  
Media Coverage ◽  
Healthcare Workers ◽  
Vaccination Campaign ◽  
University Hospital ◽  
Educational Qualification ◽  
Imaging Department ◽  
Critical Issues ◽  
High Level ◽  
The University

Introduction: Following an outbreak of meningococcal epidemic in 2015 and 2016 in Tuscany, we registered a higher demand for antimeningococcal vaccination (anti-Men ACWY) by Healthcare Workers of the University Hospital of Pisa [Azienda Ospedaliero Universitaria Pisana (AOUP)]. The purpose of this work is to analyze and discuss data on vaccination coverage resulting from this vaccination campaign.Materials and Methods: We conducted a monocentric study about anti-Men vaccination in the healthcare workers of the AOUP following the outbreak of meningococcal meningitis that occurred mainly in the population of the Tuscan provinces of Pisa, Pistoia, Prato, and Florence. The variables under examination were age, sex, educational qualification, and job profile. Department healthcare workers were vaccinated with two types of conjugated tetravalent vaccines for the A, C, Y, and W135 strains. Data were analyzed using the SPSS software.Results: The total population of the workers in AOUP was 7,188 subjects; the population considered in the study was 5,889. Between 2015 and 2017, a total of 2,423 subjects (41.1%) underwent anti-Men vaccination. Women, older HCWs, those with a lower educational qualification, doctors, and the HCWs of the maternal and child department, and imaging department recorded a statistically significant better vaccine compliance.Discussion: The AOUP, implementing the program of the Tuscany Region of vaccination against Neisseria meningitidis, has contributed to reduce the incidence of invasive meningococcal disease. Some critical issues remain in the compliance of some sections of the population, despite the high level of adherence recorded in this case, probably also due to the great media coverage of the event.

scholarly journals Incidence of Primary Aldosteronism in Patients with Hypokalemia (IPAHK+): Study Design and Baseline Characteristics

2021 ◽  
Vol 53 (12) ◽  
pp. 787-793
Author(s):  
Sven Gruber ◽  
Evangelia Stasi ◽  
Regula Steiner ◽  
Martin Reincke ◽  
Stefan Bornstein ◽  
...  
Keyword(s):  
Primary Aldosteronism ◽  
Treatment Decision ◽  
University Hospital ◽  
Cross Sectional ◽  
Significant Difference ◽  
Baseline Characteristics ◽  
High Level ◽  
The University ◽  
Actual Incidence ◽  
Study Inclusion

AbstractHypokalemia plays a central role for case finding, course, treatment decision, and prognosis of patients with primary aldosteronism. However, to date there is a lack of high-level evidence about the incidence of primary aldosteronism in hypokalemic patients. The IPAHK+study is an epidemiological, cross-sectional, monocentric study to provide evidence on the incidence of PA in a hypokalemic population. The aim of the current analysis was to describe the baseline characteristics of the first 100 patients eligible for study inclusion. The recruitment of patients with hypokalemia (≤3 mmol/l) is carried out continuously on a referral-basis by the central laboratory of the University Hospital Zurich through an automated suitability testing and data delivery system. The careful evaluation of the first 100 reported patients was based on the available reporting system. Out of 28 140 screened patients, 222 (0.79%) were identified with a serum potassium value of≤3 mmol/l (mean 2.89±0.02 mmol/l). Mean potassium levels were slightly lower in non-hypertensive subjects compared to hypertensive subjects (mean difference 0.07 mmol/l, p=0.033), while no significant difference was found between the sexes and patients with and without the diagnosis of primary aldosteronism, atrial fibrillation, or the use of diuretics. The incidence of PA was 4% in the total population studied and 7.5% in the subgroup of hypertensive patients. In conclusion, the continuous enrollment of patients from the IPHAK+hypokalemia registry into the IPAHK+trial will provide evidence about the actual incidence of primary aldosteronism in a hypokalemic outpatient population.

scholarly journals Antenatal breastmilk expression for women with diabetes in pregnancy - a feasibility study

2021 ◽  
Vol 16 (1) ◽  
Author(s):  
Maren Johnsen ◽  
Claus Klingenberg ◽  
Meta Brand ◽  
Arthur Revhaug ◽  
Gunnbjørg Andreassen
Keyword(s):  
Side Effects ◽  
Research Study ◽  
Neonatal Unit ◽  
University Hospital ◽  
Level Of Satisfaction ◽  
Breastfeeding Rates ◽  
High Level ◽  
The University ◽  
Study Participants ◽  
Antenatal Visits

Abstract Background Mothers with diabetes are less likely to achieve successful breastfeeding. Antenatal breastmilk expression (ABE) may facilitate earlier breastfeeding, but feasibility of introducing ABE and its acceptance among Scandinavian women have previously not been investigated. Methods This observational trial was conducted between the 1 January 2019 and the 12 March 2020 in Tromsø, Norway. We aimed to determine the feasibility of ABE in terms of practicality and acceptability among women with medically (metformin or insulin) treated diabetes. Women were invited to participate during antenatal visits from 32 weeks gestation. Participants received instruction and started ABE from gestation week 37 + 0. Participants, and their infants, were followed until 6–8 weeks after birth. We collected data on breastfeeding rates, infant hypoglycemia, transfer to the neonatal unit, and the women’s overall experience and satisfaction with antenatal breastmilk expression. Results Twenty-eight of 34 (82%) invited women consented to participate. All started ABE from week 37 + 0, and continued until hospital admission. No women reported any discomfort or side effects. Labor was induced at 38 weeks gestation. Twenty-four women brought harvested colostrum to the maternity ward, which was given to their infants during the first 24 h of life. Breastfeeding rates at discharge were 24/28 (86%) and 21/27 (78%) at 6–8 weeks after delivery. Seven (25%) infants were transferred to the neonatal unit; four because of hypoglycemia. Maternal satisfaction assessed 6–8 weeks after delivery revealed that all participants felt positive about the ABE, but one woman would not recommend it to other pregnant women. Conclusions Implementing a structured ABE guideline for women with medically treated diabetes was feasible. The intervention was associated with high level of satisfaction among study participants. No obvious side effects were observed, and breastfeeding rates at discharge and 6–8 weeks after delivery were higher than in comparable studies. Trial registration The study was registered at the research study registry at the University Hospital of North Norway (Nr 2018/7181).

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