Diagnosing primary ciliary dyskinesia: an international patient perspective

Primary ciliary dyskinesia (PCD) is a rare genetic disorder characterised by progressive sinopulmonary disease, with symptoms starting soon after birth. A European Respiratory Society (ERS) Task Force aims to address disparities in diagnostics across Europe by providing evidence-based clinical practice guidelines. We aimed to identify challenges faced by patients when referred for PCD diagnostic testing. A patient survey was developed by patient representatives and healthcare specialists to capture experience. Online versions of the survey were translated into nine languages and completed in 25 countries. Of the respondents (n=365), 74% were PCD-positive, 5% PCD-negative and 21% PCD-uncertain/inconclusive. We then interviewed 20 parents/patients. Transcripts were analysed thematically. 35% of respondents visited their doctor more than 40 times with PCD-related symptoms prior to diagnostic referral. Furthermore, the most prominent theme among interviewees was a lack of PCD awareness among medical practitioners and failure to take past history into account, leading to delayed diagnosis. Patients also highlighted the need for improved reporting of results and a solution to the “inconclusive” diagnostic status. These findings will be used to advise the ERS Task Force guidelines for diagnosing PCD, and should help stakeholders responsible for improving existing services and expanding provision for diagnosis of this rare disease.

Sustaining a Relationship : Insights from Canada on Linking the Government and Third Sector (Working Paper 1)

The embedding of third sector organisations in the policy world is fraught with tensions. Accountability and autonomy become oppositional forces causing an uneasy relationship. Government agencies are concerned that their equity and efficiency goals and objectives be met when they enter partnerships with the third sector for the delivery of programs and services. Third sector agencies question the impact of accountability mechanisms on their independence and identities. Even if the relationship between government and third sector agencies seems to be based on cooperation, concerns about cooptation (for nonprofits) and capturing (for governments) may linger calling the legitimacy of the partnership into question. Two means of improving the relationship between the governing and third sectors have been proposed recently in Canada by the Panel on Accountability and Governance in the Voluntary Sector (PAGVS) and the Joint Tables sponsored by the Voluntary Sector Task Force (VSTF). The two endeavours represent a historic undertaking in Canada aimed at improving and facilitating the relationship between the federal government and the nonprofit sector. The reports borrow on other country models but offer new insights into mediating the relationship, including new models for a regulatory body and a charity compact for Canada. Do these recommendations adequately address concerns of autonomy, accountability and cooptation or capturing? The Canadian reports do offer new insights into resolving the four tensions inherent in partnerships between the governing and third sector but also raise important questions about the nature of these relationships and the evolution of democracy within the Canadian political system.

A case study on a design-informed developmental evaluation

Developmental evaluation (DE) is an evaluation approach that aims to support the development of an innovation (Patton, 1994, 2011). This aim is achieved through supporting clients’ information needs through evaluative inquiry as they work to develop and refine the innovation. While core concepts and principles are beginning to be articulated and refined, challenges remain as to how to focus a developmental evaluation beyond those knowledge frameworks most immediate to clients to support innovation development. Anchoring a DE in knowledge frameworks other than those of the clients might direct attention to issues not yet obvious to clients, but which might further the goal of supporting innovation development if attended to. Drawing concepts and practices from the field of design may be one avenue with which to inform developmental evaluation in achieving its aim. Through a case study methodology, this research seeks to understand the nuances of operationalizing the guiding principles of DE as well as to investigate the utility, feasibility, and consequences of integrating design concepts and practices into developmental evaluation (design-informed developmental evaluation, “DI-DE”). It does so by documenting the efforts of a design-informed developmental evaluator and a task force of educators and researchers in a Faculty of Education as they work to develop a graduate-level education program. A systematic review into those purposeful efforts made to introduce DI-DE thinking into task force deliberations, and an analysis into the responses and consequences of those efforts shed light on what it had meant to practice DI-DE. As a whole, this research on evaluation is intended to further contemporary thinking about the closely coupled relationship between program development and evaluation in complex and dynamic environments.

La voz del otro: rompiendo con la tradición del museo

Existe una actitud predominante en el mundo de los museos según la cual las diversas culturas se presentan y se respetan de manera adecuada, dándose un diálogo efectivo entre los museos y las comunidades culturales a las que sirven. Sin embargo, el presente trabajo disiente de dicha creencia, expone sus motivos, y sugiere una trayectoria por la que los museos pueden acercarse con éxito a tales objetivos. Lo que está en juego aquí es el ethos contemporáneo e histórico de los museos y su concepto de la identidad propia, lo que interfiere con su capacidad para incluir a “los otros”, excepto en sus propios términos. El propósito del museo en este sentido es mantener su voz preeminente y su prerrogativa intelectual en sus comunicaciones con el público al que sirve. La idea de que hay múltiples voces que necesitan ser escuchadas no es un concepto fácil de contemplar para los museos, y un paso positivo en aquella dirección representaría un cambio importante con consecuencias de largo alcance.

SYSTEMATIC REVIEW AND META-ANALYSIS: EFFECTS OF WALKING EXERCISE IN CHRONIC MUSCULOSKELETAL PAIN

SYSTEMATIC REVIEW AND META-ANALYSIS: EFFECTS OF WALKING EXERCISE IN CHRONIC MUSCULOSKELETAL PAIN O'Connor S.R.1, Tully M.A.2, Ryan B.3, Baxter D.G.3, Bradley J.M.1, McDonough S.M.11University of Ulster, Health & Rehabilitation Sciences Research Institute, Newtownabbey, United Kingdom, 2Queen's University, UKCRC Centre of Excellence for Public Health (NI), Belfast, United Kingdom, 3University of Otago, Centre for Physiotherapy Research, Dunedin, New ZealandPurpose: To examine the effects of walking exercise on pain and self-reported function in adults with chronic musculoskeletal pain.Relevance: Chronic musculoskeletal pain is a major cause of morbidity, exerting a substantial influence on long-term health status and overall quality of life. Current treatment recommendations advocate various aerobic exercise interventions for such conditions. Walking may represent an ideal form of exercise due to its relatively low impact. However, there is currently limited evidence for its effectiveness.Participants: Not applicable.Methods: A comprehensive search strategy was undertaken by two independent reviewers according to the preferred reporting items for systematic reviews and meta-analyses (PRISMA) and the recommendations of the Cochrane Musculoskeletal Review Group. Six electronic databases (Medline, CINAHL, PsychINFO, PEDro, Sport DISCUS and the Cochrane Central Register of Controlled Trials) were searched for relevant papers published up to January 2010 using MeSH terms. All randomised or non-randomised studies published in full were considered for inclusion. Studies were required to include adults aged 18 years or over with a diagnosis of chronic low back pain, osteoarthritis or fibromyalgia. Studies were excluded if they involved peri-operative or post-operative interventions or did not include a comparative, non exercise or non-walking exercise control group. The U.S. Preventative Services Task Force system was used to assess methodological quality. Data for pain and self-reported function were extracted and converted to a score out of 100.Analysis: Data were pooled and analyzed using RevMan (v.5.0.24). Statistical heterogeneity was assessed using the X2 and I2 test statistics. A random effects model was used to calculate the mean differences and 95% CIs. Data were analyzed by length of final follow-up which was categorized as short (≤8 weeks post randomisation), mid (2-12 months) or long-term (>12 months).Results: A total of 4324 articles were identified and twenty studies (1852 participants) meeting the inclusion criteria were included in the review. Overall, studies were judged to be of at least fair methodological quality. The most common sources of likely bias were identified as lack of concealed allocation and failure to adequately address incomplete data. Data from 12 studies were suitable for meta-analysis. Walking led to reductions in pain at short (<8 weeks post randomisation) (-8.44 [-14.54, -2.33]) and mid-term (>8 weeks - 12 month) follow-up (-9.28 [-16.34, -2.22]). No effect was observed for long-term (>12 month) data (-2.49 [-7.62, 2.65]). For function, between group differences were observed for short (-11.57 [-16.06, -7.08]) and mid-term data (-13.26 [-16.91, -9.62]). A smaller effect was also observed at long-term follow-up (-5.60 [-7.70, -3.50]).Conclusions: Walking interventions were associated with statistically significant improvements in pain and function at short and mid-term follow-up. Long-term data were limited but indicated that these effects do not appear to be maintained beyond twelve months.Implications: Walking may be an effective form of exercise for individuals with chronic musculoskeletal pain. However, further research is required which examines longer term follow-up and dose-response issues in this population.Key-words: 1. Walking exercise 2. Musculoskeletal pain 3. Systematic reviewFunding acknowledgements: Department of Employment and Learning, Northern Ireland.Ethics approval: Not applicable.

Misura UHF (Ultra High Frequency) delle scariche parziali nei sistemi isolati a gas: metodologie per la verifica della sensibilità di misura

Le apparecchiature di manovra tramite isolamento a gas (GIS) sono in funzione da più di 45 anni e hanno dimostrato un alto livello di affidabilità, con tassi di difetto molto bassi. Tuttavia, il riscontro pratico indica che alcuni dei guasti che si verificano durante il servizio sono legati a difetti del sistema di isolamento. Molti di questi difetti possono essere rilevati tramite diagnostica con scariche parziali (PD). Per la rilevazione PD, viene utilizzato il metodo UHF perché meno sensibile ai disturbi e quindi più facile da gestire in confronto al metodo convenzionale secondo IEC 60270. Un rapporto di Electra pubblicato nel 1999 dal CIGRE Task Force 15/33.03.05 descrive la procedura in due fasi per la verifica della sensibilità del sistema UHF in modo molto generale. Dopo 15 anni dalla sua applicazione, è diventata necessaria una descrizione più dettagliata, sia su misure necessarie al test di laboratorio (Passaggio 1) che sul test in loco (Passaggio 2).

In Service to Iowa : Public Library Standards, 6th edition, August 8, 2016

The Standards and Accreditation Program exists to encourage the ongoing development of high quality public library services in Iowa. In Service to Iowa: Public Library Standards is the manual for the State Library of Iowa’s standards program. It was first published in 1985 and was updated in 1989, 1997, 2004, 2010, and now in 2016. Iowa’s voluntary public library standards program was established to give public libraries a tool to identify strengths and areas for improvement. It is also used to document the condition of public library service in Iowa, to distribute Direct State Aid funding, and to meet statutory requirements. In 2015, the Iowa Commission of Libraries appointed the Public Library Standards Advisory Task Force to revise In Service to Iowa. The Task Force in turn solicited feedback from the State Library Advisory Panel to ensure that proposed standards meet the changing needs of Iowa’s public libraries. All task force members support and stress the importance of the accreditation process and thank the Iowa public library community for its assistance.

In Service to Iowa : Public Library Standards, 4th edition, 2004

The State Library of Iowa’s Standards and Accreditation Program exists to encourage the ongoing development of high quality public library services in Iowa. The Public Library Standards Advisory Task Force will work with State Library staff to review current standards in light of known best practices and current trends, and to develop the 4th edition of In Service to Iowa: Public Library Measures of Quality.

'Artificial Immune Systems Tutorial'

The biological immune system is a robust, complex, adaptive system that defends the body from foreign pathogens. It is able to categorize all cells (or molecules) within the body as self-cells or non-self cells. It does this with the help of a distributed task force that has the intelligence to take action from a local and also a global perspective using its network of chemical messengers for communication. There are two major branches of the immune system. The innate immune system is an unchanging mechanism that detects and destroys certain invading organisms, whilst the adaptive immune system responds to previously unknown foreign cells and builds a response to them that can remain in the body over a long period of time. This remarkable information processing biological system has caught the attention of computer science in recent years. A novel computational intelligence technique, inspired by immunology, has emerged, called Artificial Immune Systems. Several concepts from the immune have been extracted and applied for solution to real world science and engineering problems. In this tutorial, we briefly describe the immune system metaphors that are relevant to existing Artificial Immune Systems methods. We will then show illustrative real-world problems suitable for Artificial Immune Systems and give a step-by-step algorithm walkthrough for one such problem. A comparison of the Artificial Immune Systems to other well-known algorithms, areas for future work, tips & tricks and a list of resources will round this tutorial off. It should be noted that as Artificial Immune Systems is still a young and evolving field, there is not yet a fixed algorithm template and hence actual implementations might differ somewhat from time to time and from those examples given here.

'Artificial Immune Systems Tutorial'

The biological immune system is a robust, complex, adaptive system that defends the body from foreign pathogens. It is able to categorize all cells (or molecules) within the body as self-cells or non-self cells. It does this with the help of a distributed task force that has the intelligence to take action from a local and also a global perspective using its network of chemical messengers for communication. There are two major branches of the immune system. The innate immune system is an unchanging mechanism that detects and destroys certain invading organisms, whilst the adaptive immune system responds to previously unknown foreign cells and builds a response to them that can remain in the body over a long period of time. This remarkable information processing biological system has caught the attention of computer science in recent years. A novel computational intelligence technique, inspired by immunology, has emerged, called Artificial Immune Systems. Several concepts from the immune have been extracted and applied for solution to real world science and engineering problems. In this tutorial, we briefly describe the immune system metaphors that are relevant to existing Artificial Immune Systems methods. We will then show illustrative real-world problems suitable for Artificial Immune Systems and give a step-by-step algorithm walkthrough for one such problem. A comparison of the Artificial Immune Systems to other well-known algorithms, areas for future work, tips & tricks and a list of resources will round this tutorial off. It should be noted that as Artificial Immune Systems is still a young and evolving field, there is not yet a fixed algorithm template and hence actual implementations might differ somewhat from time to time and from those examples given here.

Possibilidade de emprego de Forças-Tarefa Subagrupamento nos cenários do conceito estratégico militar português

O presente trabalho tem como objeto de estudo o modelo emergente de forças de escalão subagrupamento capazes de operações dispersas e detentoras de elementos de combate, apoio de combate, apoio de serviços e apoio de comando, modeladas no conceito de Força- Tarefa Subagrupamento. O objetivo do estudo é avaliar a possibilidade de emprego de Forças-Tarefa Subagrupamento nos cenários do Conceito Estratégico Militar. Nesse sentido, são analisadas duas operações de estados aliados, para as quais módulos do tipo Força-Tarefa Subagrupamento foram gerados, a Operação Romeo-Alfa e a Operação Serval. Ambas as operações são então comparadas e transpostas para os cenários de emprego da ação militar presentes no Conceito Estratégico Militar, especificamente, para o cenário de Segurança Cooperativa. Partindo do pressuposto que as forças são geradas para cenários, portanto, dependentes destes, se as operações analisadas geraram Forças-Tarefa Subagrupamentos e se são traduzíveis no cenário de Segurança Cooperativa, logo, a geração e emprego de Forças-Tarefa Subagrupamento é possível para este cenário. O trabalho conclui com a recomendação de que o modelo Força-Tarefa Subagrupamento seja adotado, com o objetivo de favorecer a capacidade de adaptação das Forças Armadas face aos requisitos do novo paradigma da conflitualidade.

Prevalencia de hiperlipidemia y factores asociados en adolescentes de los colegios de la ciudad de Cuenca. Cuenca 2007

Se realizó un estudio transversal en 237 adolescentes con edades comprendidas entre 12 y 19 años. La muestra fue aleatoria, estratificada, proporcional de un universo finito y homogéneo. Se determinaron los valores en suero de colesterol, triglicéridos LDL y HDL en mg/dl. Se midieron los índices antropométricos de peso, talla y se clasificó el estado nutricional de acuerdo a IMC según normas del International Task Force; los antecedentes familiares, la actividad física, el estado nutricional y los hábitos alimenticios. Se realizó un análisis univariado, bivariado y multivariado. La prevalencia de hiperlipidemia fue de 29.1 por ciento (IC: 23.3 por ciento - 34.8 por ciento). Hipertrigliceridemia 17.3 por ciento. Hipercolesterolemia 16.5 por ciento. La prevalencia de sobrepeso fue de 16 por ciento y la obesidad un 2.5 por ciento. El 54 por ciento de adolescentes son sedentarios. El 67.5 por ciento manifiesta tener antecedentes familiares. En cuanto a los patrones de ingesta alimenticia se halló bajo consumo de lácteos y huevos 59.9 por ciento, de frutas 51.1 por ciento, de verduras, 70 por ciento, de carnes 72.2 por ciento, y de cereales 30.4 por ciento. El exceso de consumo de cereales (OR 2.4 IC 1.2 - 4.8) y el sobrepeso (OR 3.4 IC 1.6 - 6.9) resultaron ser factores de riesgo para la hiperlipidemia, mientras que la talla (OR 0.5 IC 0.2 - 0.9) resultó ser un factor protector. Existe una alta prevalencia de hiperlipidemia en los adolescentes escolarizados de la ciudad de Cuenca. Es necesario implementar programas d intervención adcuados para adoptar estilos de vida saludables

Business Process Management and Process Mining within a Real Business Environment: An Empirical Analysis of Event Logs Data in a Consulting Project

Il presente elaborato esplora l’attitudine delle organizzazioni nei confronti dei processi di business che le sostengono: dalla semi-assenza di struttura, all’organizzazione funzionale, fino all’avvento del Business Process Reengineering e del Business Process Management, nato come superamento dei limiti e delle problematiche del modello precedente. All’interno del ciclo di vita del BPM, trova spazio la metodologia del process mining, che permette un livello di analisi dei processi a partire dagli event data log, ossia dai dati di registrazione degli eventi, che fanno riferimento a tutte quelle attività supportate da un sistema informativo aziendale. Il process mining può essere visto come naturale ponte che collega le discipline del management basate sui processi (ma non data-driven) e i nuovi sviluppi della business intelligence, capaci di gestire e manipolare l’enorme mole di dati a disposizione delle aziende (ma che non sono process-driven). Nella tesi, i requisiti e le tecnologie che abilitano l’utilizzo della disciplina sono descritti, cosi come le tre tecniche che questa abilita: process discovery, conformance checking e process enhancement. Il process mining è stato utilizzato come strumento principale in un progetto di consulenza da HSPI S.p.A. per conto di un importante cliente italiano, fornitore di piattaforme e di soluzioni IT. Il progetto a cui ho preso parte, descritto all’interno dell’elaborato, ha come scopo quello di sostenere l’organizzazione nel suo piano di improvement delle prestazioni interne e ha permesso di verificare l’applicabilità e i limiti delle tecniche di process mining. Infine, nell’appendice finale, è presente un paper da me realizzato, che raccoglie tutte le applicazioni della disciplina in un contesto di business reale, traendo dati e informazioni da working papers, casi aziendali e da canali diretti. Per la sua validità e completezza, questo documento è stata pubblicato nel sito dell'IEEE Task Force on Process Mining.

Building bridges for innovation in ageing:synergies between action groups of the EIP on AHA

The Strategic Implementation Plan of the European Innovation Partnership on Active and Healthy Ageing (EIP on AHA) proposed six Action Groups. After almost three years of activity, many achievements have been obtained through commitments or collaborative work of the Action Groups. However, they have often worked in silos and, consequently, synergies between Action Groups have been proposed to strengthen the triple win of the EIP on AHA. The paper presents the methodology and current status of the Task Force on EIP on AHA synergies. Synergies are in line with the Action Groups’ new Renovated Action Plan (2016-2018) to ensure that their future objectives are coherent and fully connected. The outcomes and impact of synergies are using the Monitoring and Assessment Framework for the EIP on AHA (MAFEIP). Eight proposals for synergies have been approved by the Task Force: Five cross-cutting synergies which can be used for all current and future synergies as they consider overarching domains (appropriate polypharmacy, citizen empowerment, teaching and coaching on AHA, deployment of synergies to EU regions, Responsible Research and Innovation), and three cross-cutting synergies focussing on current Action Group activities (falls, frailty, integrated care and chronic respiratory diseases).

Executive order no. 2016-24

This executive order by Governor Nikki R. Haley establishes the South Carolina Veterans Policy Advisory Committee, which shall act as an advisory committee to the South Carolina Military Base Task Force for the purpose of analyzing the contributions and needs of veterans in the State of South Carolina.