Raccolta dati su alcuni nuovi materiali di impiego nel settore elettrico e elettronico

Questa tesi ha come scopo quello di fare una rassegna dei materiali di recente sviluppo nel settore elettrico ed elettronico, descrivendone le proprietà, lo sviluppo storico, le applicazioni attuali e anche quelle possibili in futuro che attualmente sono solo in fase di sperimentazione. Limitandosi all’illustrazione delle caratteristiche e dei campi di applicazione dei vari materiali, senza entrare nel dettaglio dei metodi costruttivi né sulle tecniche di ricerca attuali, questa tesi vuole descrivere la situazione dello stato attuale dei materiali elettromagnetici e dei loro differenti utilizzi

Changing Behaviour towards Aerobic and Strength Exercise (BASE): Design of a randomised, phase I study determining the safety, feasibility and consumer-evaluation of a remotely-delivered exercise programme in persons with multiple sclerosis

Background Multiple sclerosis is a chronic progressive neurological disease. Evidence attests to the benefits of exercise, guidelines for exercise in multiple sclerosis are available. Remote-delivery of exercise adherence programmes based on the exercise guidelines require urgent testing. Aims The design, and outcomes of Behaviour towards Aerobic and Strength Exercise in MS (BASE-MS), a remotely-delivered exercise training study based principles of behaviour change, will further evaluate the remote-delivery of the current exercise guidelines. Methods BASE is a 4-month clinically relevant randomised controlled trial to explore the delivery of a remotely supervised, guidelines-based exercise programme for persons with multiple sclerosis, underpinned by principles of health behaviour change. Initially, 72 persons with mild to moderate multiple sclerosis will be randomised in a 1:1:1 allocation to receive the BASE programme, or act as controls continuing usual care. On programme completion, exercise participants will be further randomised to an optimised adherence treatment or usual adherence. Our online survey assesses the primary outcome of exercise participation, and secondary outcomes of symptoms, and correlates of behaviour change at baseline, month four, month five and month eleven. Online surveys will capture coach and participant feedback to identify the contexts, mechanisms and outcomes of BASE implementation. Conclusions The research and clinical landscape for MS management must remain in-step with public health and health communication. BASE tests the remote-delivery of the current exercise guidelines for exercise in persons with MS. Safety, feasibility and evaluative outcomes will provide rich data for future remote-delivery of exercise in neurological conditions

Distribution of cystic fibrosis patients not eligible to studied CFTR modulators in Europe

Studied Cystic Fibrosis (CF) modulators have been announced to cover 90% of all CF patients. A genotype-agnostic novel therapy for CF is under development, which will focus on people with CFwho have mutations that are not eligible for the approved small molecule modulators and triple combination therapies. The data in the European Cystic Fibrosis Society Patient Registry (ECFSPR) are used to provide a quantitative overview of eligible patients. Patients who are alive and seen during the 2017, or alive and not seenwere considered (excluding France who delivered the data directly to the sponsor). Not considered were patients F508del homozygotes eligible for elexacaftor/tezacaftor/ivacaftor, tezacaftor/ivacaftor, lumacaftor/ivacaftor, or heterozygotes eligible for elexacaftor/tezacaftor/ivacaftor. Neither were patients with at least one of the following mutations: E56 K, P67L, R74W, D110E, D110H, R117C, E193 K, L206W, R347H, R352Q, A455E, D579G, 711 +3A->G, E831X, S945L, S977F, F1052 V, K1060 T, A1067 T, R1070W, F1074L, D1152H, D1270N, 2789+5G->A, 3272-26A->G, 3849+10kbC->T (eligible for tezacaftor/ivacaftor, ivacaftor) and R117H, G178R, S549N, S549R, G551D, G551S, G1069R, R1070Q, G1244E, S1251N, S1255P, G1349D (eligible for ivacaftor). From the 41,264 patients registered in the ECFSPR for the 2017, 4,798 patients (12%) carry a genotype that is not eligible to the currentlyapproved modulators or the triple combo. The percentage of non-eligible patients varies from 2,3% in Ireland to 71,9% in Armenia. 2,954 of these patients are 11 years or older, 1,561 have a FEV1% of predicted value between 40% and 90%. In Europe approximately 88% of the patients will be eligible for the currently approved modulators or triple combo, in some countries this percentage is below 50%. With the ECFSPR data, a realistic and useful overviewcould be created to support the design of a study for patients that are not eligible to the currently available modulator and triple combination therapies

The European Cystic Fibrosis Society Patient Registry (ECFSPR) data validation programme: accuracy and consistency of data

Background: The ECFSPR database for 2016 contains data of 44,719 patients from 31 countries. Data of high quality is essential for use in annual reports and epidemiological research. Methods: A validation programme was introduced to quantify consistency and accuracy of data-input at source level, with on-site visits to countries entering data directly in the ECFSTracker software. Data fields to verify: demographic, diagnostic and transplantation, anthropometric and best lung function measurement, bacterial infections, medications and complications. Accuracy was defined as the proportion of values entered in ECFSTracker matching the medical record, and definitions used by the ECFSPR (consistency) for randomly selected cases. Results: Ten out of 41 centres (24%) in 4 countries (Austria, Portugal, Slovakia, Switzerland), reporting 6550% of all patients in their countries, were selected. Demographic, diagnostic and transplant data were checked for 489 patients (21%*), clinical data for 463 patients (20%*) (2016 data). Data on birth, gender, and transplantation exceeded 98.8% accuracy. Anomalies on reported mutations was 0.9%; reliable source data based on genetic reports, were available in 3 out of 4 countries in 95,9%- 91,9% of all patients, 55,5% in one country. Antropometry (92,2%), lung function (86,4%), inhaled antibiotics (96.1%), DNase (89.1%), pancreatic enzyme use (97.6%) were accurate and consistent with the ECFSPR definitions, so were chronic Pseudomonas (95.0%), Burkholderia infection (97.0%), and hemoptysis (94.6%). Liver disease was reported inconsistently due to different interpretation of the definition and resulted in an accuracy of 86.8%. Conclusions: The ECFSPR dataset is highly accurate for most data verified at source level. To further optimize we recommend centres to use a reliable source for genetic information, adhere to the definition of best lung function, and the ECFSPR to redefine liver disease. *of the total patients in these countries

Світлій пам'яті вченого-етнолога сучасності Ганни Горинь

Українське народознавство зазнало тяжкої втрати. Передчасно, напередодні Великодня (29 березня 2007 року), на 66 у році життя відійшла у вічність Ганна Йосипівна Горинь – відома вчена, етнолог, культуролог, кандидат історичних наук, старший науковий співробітник відділу етнології сучасності Інституту народознавства НАН України, член НТШ та вченої ради ІН НАНУ, талановитий педагог, кваліфікований музейний працівник із високим почуттям патріотичного обов’язку, громадянською свідомістю та національною гідністю.The article is dedicated to the memory of outstanding ethnographer, expert of culture, permanent worker of Modern Ethnology Department at the Institute of Ethnology of National Academy of Sciences of Ukraine Hanna Horyn. The life of this woman was full of many trials. Having overcome these trials she left rich scientific heritage