Pioneer Initiative Research Articles

Abstract 4960: PIONEER initiative: Providing patient access to functional precision medicine

Abstract Eighty-five percent of patients receive medical care in cancer centers without National Cancer Institute (NCI) designation or significant ongoing research. The ability to access fresh tumor tissue for immediate functional testing is now available with appropriate logistical coordination. Cryopreservation of these tissues also allows testing to be done at a later date. We hypothesize that patient access to and ownership of each individual's tissues will facilitate personalized testing, thus bridging the chasm between research and the clinical cancer care for the individual patient. The PIONEER Initiative stands for Precision Insights On N-of-1 Ex vivo Effectiveness Research. In this Initiative we save cancerous tissue for any patient at any location, with subsequent cryopreservation and functional testing as needed and as able within an environment in which neither are standard. Our endpoint was to determine if this process serves to alter care for individual patients, and to what degree. The SpeciCare PIONEER Initiative: Precision Insights On N-of-1 Ex Vivo Effectiveness Research Based on Individual Tumor Ownership Trial (MYCT001) received human subjects IRB approval (Approval Number: 33943/1) from Quorum Review. The PIONEER Initiative is our lead clinical trial designed to provide the foundation for subsequent adaptive trials. Our mission with this trial was to demonstrate the utility of carrying out functional precision medicine in that cohort of patients who receive local cancer care at institutions that do not have significant research capabilities or are not NCI-designated cancer centers. Most cancer patients (~85%) are in this category. It is imperative to open the possibility of the best-in-class functional precision medicine testing to these patients. Core aspects of the PIONEER Initiative involve scaling up this process to approximately 200 patients, showing that our proof of concept in a more limited set of patients can ultimately scale to arbitrarily large numbers of patients. We see this capacity filling an important unmet need within the cancer community. The primary endpoint was the return of actionable information to positively impact care as assessed by the patient's clinical team and the patient. The underlying basic assumption of the PIONEER Initiative is that the ability to receive the best in cancer care should not come with restriction as to location, age, or medical condition. The PIONEER Initiative design facilitates inclusion of subjects across all these divides, thus providing beneficence to all participants. Among the 60 patients whose tumors had ex vivo drug testing performed, none of the data was included in the clinical decision making of the healthcare team. We conclude that physicians are not adequately prepared to use ex vivo drug testing data and the more likely acceptance of molecular characterization is primarily driven by genomic sequencing. Citation Format: Ken Dixon, Jared James Barrott, David Booker. PIONEER initiative: Providing patient access to functional precision medicine [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2024; Part 1 (Regular Abstracts); 2024 Apr 5-10; San Diego, CA. Philadelphia (PA): AACR; Cancer Res 2024;84(6_Suppl):Abstract nr 4960.

The Development of a Clinical Registry Digital Database on Invasive Fungal Infections in India: Advancing Epidemiological Understanding and Patient Care.

A well-structured digital database is essential for any national priority project as it can provide real-time data analysis and facilitate quick decision making. In recent times, particularly after the COVID-19 pandemic, invasive fungal infections (IFIs) have emerged as a significant public health challenge in India, affecting vulnerable population, including immunocompromised individuals. The lack of comprehensive and well-structured data on IFIs has hindered efforts to understand their true burden and optimize patient care. To address this critical knowledge gap, the ICMR has undertaken a Pan-India pioneer initiative to develop a network of Advanced Mycology Diagnostic research centres in different geographical zones of the country (ICMR-MycoNet). Under the aegis of this project, a clinical registry on IFIs in the ICUs is initiated. This process paper presents a detailed account of the steps involved in the establishment of a web-based data entering and monitoring platform to capture data electronically, ensuring robust and secure data collection and management. This system not only allows participating ICMR-MycoNet centres to enter patient information directly into the database using standardized Case Report Form (CRF) but also includes data validation checks to ensure the accuracy and completeness of entered data. It is complemented by a real-time, web-based, and adaptable data visualization platform. This registry aims to provide crucial epidemiological insights, promote evidence-based hospital infection control programs, and ultimately improve patient outcomes in the face of this formidable healthcare challenge.

The TANDEM Euratom project: Context, objectives and workplan

The TANDEM project is a European initiative funded under the EURATOM program. The project started on September 2022 and has a duration of 36 months. TANDEM stands for Small Modular ReacTor for a European sAfe aNd Decarbonized Energy Mix.Small Modular Reactors (SMRs) can be hybridized with other energy sources, storage systems and energy conversion applications to provide electricity, heat and hydrogen. Hybrid energy systems have the potential to strongly contribute to the energy decarbonization targeting carbon-neutrality in Europe by 2050. However, the integration of nuclear reactors, particularly SMRs, in hybrid energy systems, is a new R&D topic to be investigated. In this context, the TANDEM project aims to develop assessments and tools to facilitate the safe and efficient integration of SMRs into low-carbon hybrid energy systems. An open-source “TANDEM” model library of hybrid system components will be developed in Modelica language which, by coupling, will extend the capabilities of existing tools implemented in the project. The project proposes to specifically address the safety issues of SMRs related to their integration into hybrid energy systems, involving specific interactions between SMRs and the rest of the hybrid systems; new initiating events may have to be considered in the safety approach.TANDEM will study two hybrid systems covering the main trends of the European energy policy and market evolution at 2035's horizon: a district heating network and power supply in a large urban area, and an energy hub serving energy conversion systems, including hydrogen production; the energy hub is inspired from a harbor-like infrastructure. TANDEM will provide assessments on SMR safety, hybrid system operationality and techno-economics. Societal considerations will also be encased by analyzing European citizen engagement in SMR technology safety.The work will result in technical, economic and societal recommendations and policy briefs on the safety of SMRs and their integration into hybrid energy systems for industry, R&D teams, Technical Safety Organizations, regulators, Non-Governmental Organizations and policy makers. The TANDEM consortium will involve 17 partners from 8 European countries (Belgium, Czech Republic, Finland, France, Germany, Italy, Spain, Ukraine).The TANDEM project has the ambition to become a pioneer initiative in Europe in gathering efforts and expertise around development of SMRs integration into hybrid energy systems. The dissemination and the exploitation of the project outcomes as well as the proposed Education & Training activities shall serve as a basis for a number of new R&D and innovation projects addressing the safety issues of SMRs and their integration into hybrid energy systems.

Human Dimensions of the Reintroduction of Brazilian Birds

People's acceptability for wildlife, stakeholders' engagement and involvement are acknowledged as key factors for the success of wildlife reintroduction projects. We analyzed the main National Action Plans (NAPs) (the Brazilian management participatory instrument for the conservation of endangered species) for eight bird species and conducted an online questionnaire with researchers and practitioners involved in those species reintroduction programs. The assessment of the main Brazilian bird's reintroduction programs showed that, in general, efforts have been made to integrate local people into it. Nevertheless, the actions were disconnected, isolated and fragmented. A formal protocol, designed, discussed and approved by experts aiming to address the human dimensions (HD) of human-bird interactions (HBI), preferably to be used in each stage of the reintroduction programs, was not found. Actions considered related to human dimensions are mainly under the umbrella of environmental education interventions or campaigns, more directed to children and youth; correspond to activities performed by locals with the birds and/or captive birds facilities; or, fostering artcraft production or bird watching activities. The weak or sometimes absent human dimensions approach to this important conservation tool may indicate either the novelty for Brazilian researchers and managers of the science of human dimensions within the field of wildlife management or the lack of dialogue between natural and social sciences when wildlife conservation is at stake. Reintroductions are expensive, sensitive, and labor-intensive processes. It becomes necessary due the conservation status of the species and its implementation follows a careful research of biological, ecological and socio-institutional regional background that identifies the drivers of species extinction and plans according to it. Understanding and predicting people's behaviors and its triggers are paramount to successful reintroduction projects. Thus, making use of well-planned HD studies in HBI may be the watershed between success or failure of reintroduction programs. This study was a pioneer initiative of its kind and it aimed to provide sound recommendations for managers, researchers and practitioners to acknowledge the relevance of HD and its core role in the reintroduction of endangered bird species.

Registration of Off-Road Practices as Intangible Heritage and Implementation of the Off-Road Ecomuseum in Nova Lima, Minas Gerais

The project for Registration of off-road practices as intangible heritage and implementation of the Off-Road Ecomuseum in Nova Lima is a popular initiative that seeks to safeguard tradition and the benefits generated by off-road practices on the city's trails. This is a pioneer initiative in the country and has a multidisciplinary character, as it involves three major areas: sport, culture and tourism. From the first indigenous occupations in Minas Gerais, through pioneers, pathfinders, drovers, rural producers who transported their items for sale and to local markets to the present day, the trails of Nova Lima are traveled by sportsmen and tourists. Thus, the aim is to use the trails from their conception as places of memory Keywords: Ecomuseum, culture, tourism, ecotourism, territory.

COVID-19, liquidity and financial health: empirical evidence from South Asian economy

PurposeThe pandemic COVID-19 has affected every sector of an economy in every possible way. Banking sector of Bangladesh has been affected by it badly. The purpose of this paper is to find out the impact of COVID-19 on the liquidity and financial health of the listed banks in Bangladesh.Design/methodology/approachLiquidity ratios are calculated to measure the liquidity condition of the banks and revised Altman's Z-Score Model for non-manufacturing companies is used to measure the financial health. The ratios are compared before and during the COVID-19 periods to assess the impact.FindingsThe findings of this study indicate a deterioration of liquidity position and financial health of the listed banks after the emergence of this pandemic. Though the banks have poor liquidity ratios and financial health prior to the emergence of this pandemic, they have decreased more in the second quarter of 2020. Most of the banks have poor liquidity ratios and cash position. The listed Islamic Banks have poor financial health than the listed Commercial Banks and all the banks belong to the red zone in all the quarters.Practical implicationsThe results of this study will have policy implications for companies and regulators of money market.Originality/valueThis paper is a pioneer initiative in assessing the impact of COVID-19 pandemic on liquidity and financial health based on empirical data.

Korespondencja ks. dr. Jana Kwolka z ks. prof. Janem Fijałkiem za lata 1919–1936

[The correspondence between Rev. Prof. Jan Fijałek and Rev. Dr Jan Kwolek in the years 1919–1936] This paper presents a collection of a few dozen letters written between 1919 and 1938. Their authors were two eminent representatives of the humanities and of the Polish Catholic Church at the turn of the 19th and 20th centuries. One of them, Reverend Professor Jan Nepomucen Fijałek, represented the Kraków Archdiocese, though professionally he was associated with the University of Lviv and the Jagiellonian University. As an outstanding scholar and expert on sources to the history of medieval Church and spiritual culture of Poland, as well as a distinguished pedagogue, he enjoyed great renown in the world of science. The other correspondent, Reverend Doctor Jan Kwolek, a lawyer, lecturer at the Theological Institute of the Latin rite in Przemyśl, chancellor of the Episcopal Curia, organizer and director of a Diocesan Archive, a model for the whole country, unceasingly developed his interests in canon studies, history of the Church, and showed great concern for preserving the archive heritage of the Przemyśl Diocese. The majority of the letters were written by Rev. Kwolek, though they are not complete; the addressee had collected them meticulously, sometimes adding brief commentaries. The Przemyśl priest must not have attached a lot of weight to collecting the letters of the Kraków mentor, as only over a dozen of them have been preserved. The sources present very interesting material. The “supplicant” here is definitely Rev. Kwolek, seeking in the unquestionable scientific authority of Rev. Fijałek advice on organizing the Przemyśl archive but also methodological and factual guidelines for archive research and publications. In the course of time the distance between the two scholars was gradually decreasing, though it never crossed accepted social boundaries. What confirms that is the elaborate titles both correspondents addressed each other with. The subject matter of the letters is rather diverse and includes several themes. The dominant one is Rev. Kwolek’s requests to be recommended relevant literature necessary to complete a reference library needed in research and scholarly work. Quite a lot of space is also devoted to the Przemyśl priest’s reports on the progressing work on completing and organizing the archive of the Episcopal Curia in Przemyśl. Rev. Prof. Fijałek, apparently did not hide his sincere appreciation of the activity of the junior priest, indefatigable archive fanatic, encouraging him, providing him with expert instruction and warning him against naïve faith in the patronage of successive bishops. Another extensive motif is common and readily produced by church circles gossip on different Church dignitaries in Kraków and Przemyśl, as well as expectations of personal reshuffles and new careers with the start of every new pontificate. Without a doubt, the presented material deserves publication, as it shows the effort of creating and then preserving pioneer initiatives on scholarly and religious ground, particularly in Przemyśl in the first half of the 20th century.

Estudo da dispensação da talidomida no tratamento da hanseníase pela Assistência Farmacêutica do Município de Araguaína-TO

A talidomida foi amplamente prescrita no passado por seus efeitos contra enjôos matinais de gravidas, no entanto, muitas crianças foram afetadas por seus efeitos teratogênicos até então desconhecidos, alguns anos depois o fármaco vem sendo utilizado no tratamento do Eritema Nodoso Hansêmico (ENH). O presente estudo visa analisar a dispensação da talidomida no tratamento da hanseníase por meio da Assistência farmacêutica (AF), que utiliza o método de consultório no município de Araguaína-TO. Objetivando averiguar a dispensação e analisar o método empregado, além de revisar o tratamento da hanseníase com a talidomida. Trata-se de um estudo retrospectivo de prontuários referentes às dispensações de talidomida no tratamento da hanseníase, obtidos pela Assistência Farmacêutica nos anos de 2013 a 2018. Através disto, foi desenvolvida uma planilha como instrumento de trabalho, onde foram obtidos os dados de cada usuário referente ao gênero, número de pacientes, idade e reações frequentes, e assim traçar o perfil do usuário em tratamento de hanseníase atendido pela AF e ressaltar o atendimento realizado no consultório farmacêutico, uma iniciativa pioneira no Brasil.

Environmental and energetic effects of cleaner production scenarios on the Sodium Lauryl Ether Sulfate production chain

Abstract Sodium Lauryl Ether Sulfate is an important surfactant used by the Specialty Chemical Industry. However, little quantitative information regarding its environmental impacts in a systemic perspective is available. Therefore, this study assessed the environmental performance of 1.0 ton of Sodium Lauryl Ether Sulfate containing 3 mol of ethylene oxide (SLES 3EO), by means of a ‘cradle-to-gate’ Life Cycle Assessment. Environmental impacts were quantified in terms of Global Warming Potential and Primary Energy Demand (PED). Carbon Footprint was also estimated according to ISO 14067 guidelines. The Global Warming indicator was calculated as 1.87 t CO2eq/t for the baseline scenario, while PED was estimated as 71.7 GJ/t. Based on the main sources of impact, four individual alternatives aiming at environmental performance improvement were proposed, based on the Resource Efficient and Cleaner Production philosophy: S1) production using palm kernel oil from Brazil; S2) production from synthetic lauryl alcohol; S3) generation of thermal energy from biomass; S4) SLES 3EO synthesis using ethylene oxide obtained from sugarcane. Possible synergies deriving from the combinations of these propositions were also assessed, considering seven additional scenarios (S5 – S11). It was observed that lauryl alcohol performance was very influential and decisive for the results. Moreover, thermal energy from biomass was beneficial in terms of Global Warming, while increasing the renewable fraction of the PED indicator. On the other hand, ethylene oxide production from sugarcane ethanol was not an advantageous alternative, due to high fuel and thermal energy demands throughout its production chain. The Carbon Footprint assessment according to the ISO 14067 standard indicates a beneficial change in the impact profiles between the scenarios presenting renewable source assets participating in their life cycle, with a strong reduction in relation to the results obtained by applying the IPCC approach. Synergy among cleaner production propositions was observed and highly influenced by the amount of biomass incorporated to SLES 3EO life cycle. This can be considered an innovative approach regarding the Brazilian context. As a pioneer initiative, it is expected that the outcomes from this investigation would contribute to future initiatives investigating detergent formulation from an environmental perspective.

Aerial Surveys and Geographic Information in Modern China

Abstract. Today when online satellite images are just a click away, access to geographic information showing the latest images of the globe has dramatically expanded, and historico-geographic research based on such information is flourishing. However, in the study of Chinese history, historical research employing GIS or similar technologies is still in its infancy, since “historical” geographic information with a high degree of precision are lacking. From within the ambit of Chinese geographic information, this report specifically highlights aerial surveys effected during the Republic of China era. To start, we review the history of domestic aerial surveys during R. O. C. period. Then, focusing on Nanjing as an example, we proceed to introduce maps that were actually created based on aerial surveys.Chinese aerial surveys date back to around 1930. At the Nationalist Party’s General Assembly in 1929, partisans proposed for the need for aerial surveys. In 1930, the “Aerial Photography and Survey Research Team” was formed within the General Land Survey Department at General Staff Headquarters (National Army of the Republic of China). Consequently, foreign technicians were invited to provide relevant education/training. In June 1931, China’s pioneer initiative in aerial photography took place in Zhejiang province. The aim of aerial surveys in those early days was to create maps for military purposes. Between 1932 and 1939, topographic maps of fortifications located in areas such as the Jiangnan district were prepared. Further, starting from around the same period until the Sino-Japanese War, land registry maps based on aerial surveys were also produced. After the Sino-Japanese War ended, the above-mentioned directorate handed over responsibility for aerial surveys to the Naval General Staff. However, in 1949 the Chinese Communist Party confiscated the maps theretofore produced.Although the aerial photographs and the geographic information produced therefrom during the R. O. C. era were seized by the People’s Republic of China, in actuality, some had previously been transferred to Taiwan. The topographic maps of the Nanjing metropolitan area (一萬分一南京城廂附近圖), based on aerial surveys and drawn in 1932, are currently archived at Academia Historica in Taipei. Comprising a total of 16 sheets, these maps were drawn on a scale of 1:10,000 by the General Land Survey Department.Similarly, other maps (各省分幅地形圖) produced by the General Land Survey Department, comprising a total of 56 sheets and partly detailing Nanjing, are now in the possession of Academia Sinica in Taipei. There was no information about photographing or making in these maps. But almost the same maps were archived at Library of Congress in Washington D. C. According to those maps at LC, based on aerial photographs taken and surveys conducted in 1933, these topographic maps (1:10,000 scale) were completed in 1936.The examples introduced above are topographic maps based on aerial photography. However, starting in 1937, land registry maps were also created. Detailing the outskirts of Nanjing (1:1,000 scale) and comprising a total of 121 sheets, they are now archived at Academia Historica. While the land registry maps were produced in 1937, supplementary surveys were effected following the Sino-Japanese War in 1947.Since the geographic information based on aerial surveys during the R. O. C. era in China were precise, they can serve as a source of manifold information. This report only delved into information developed by the Government of the R. O. C., but it is becoming evident that U. S. Armed Forces and Japan also produced geographic information of their own based on aerial surveys. If the comprehensive panorama captured by all three protagonists can be illuminated, further advances in Chinese historico-geographic studies employing geographic information will be forthcoming.

Implementation of employee suggestion programme: a case study of the Middle East health-care service company

Learning outcomes After studying this case, the students should be able to: explain the importance of employee engagement; illustrate the role of the participatory management style in an organizational context; discuss why managers may use engagement practices to operate effectively in businesses to lead change and innovation; identify the critical success factors, barriers and outcomes of employee involvement in driving high performance; and discuss the dilemma faced by the managers in the emerging economies while driving the momentum of excellence in the long run. Case overview/synopsis This is a real case about a leading health-care service company located in the Middle East. The health-care organization’s name is changed to NOVA for reasons of confidentiality. The NOVA is an independent, public joint stock company created to meet the curative needs of the public health-care system in Middle East. The company introduced the Employee Suggestion Scheme named Minara in 2011 in a Federal Government decree, introducing innovation as a major pillar of management in 2013 with intent to encourage organizations build innovative solutions and pioneer initiatives and apply it effectively in services, processes and programmes. Making the Minara programme work in line with the national health agenda, Ms. Fatima who headed the Excellence and Innovation Department took the initiative of accelerating the innovative Programme (Minara). The case data were collected based on both primary and secondary sources. Although the case is based on the real data, it has been ammonised. The case describes the transformation of the innovation process at NOVA through the employee engagement programme (Minara) in meeting the disruptive challenges. This case addresses the challenges faced by the Excellence and Innovation manager who used effective employee engagement practices through the Employee Suggestion Programme in a creative way to bring about innovation in the health-care sector. The case outlines the dilemma faced by the Excellence and Innovation manager in bringing about innovation through the Employee involvement programme in the emerging economic scenario. The case will focus on the analysis of the different aspects of the issues pertaining to employee engagement, employee motivation and the framing of empowerment strategies to bring about innovation and continuous improvement through an effective employee suggestion programme. The case is intended to give budding managers an insight into innovation and employee engagement practices that impact performance in the organization. Complexity academic level This case will be suitable to be used in Human Resource Management and Management of Change and Innovation course at undergraduate and Master’s level. Supplementary materials Teaching Notes are available for educators only. Please contact your library to gain login details or email support@emeraldinsight.com to request teaching notes. Subject code CSS 1: Accounting and Finance

The PIONEER Initiative: Precision Insights On N-of-1 Ex Vivo Effectiveness Research Based on Individual Tumor Ownership (Precision Oncology)

The PIONEER Initiative: Precision Insights On N-of-1 Ex Vivo Effectiveness Research Based on Individual Tumor Ownership (Precision Oncology)

Judicial Restructuring in the Courts of São Paulo

The Insolvency Monitor is a pioneer initiative from the Nucleo de Estudos de Processos de Insolvencia - NEPI (Research Center of Insolvency Proceedings) of PUCSP (the Catholic University of Sao Paulo) and the Associacao Brasileira de Jurimetria – ABJ (Brazilian Association of Jurimetrics). Its goals are to collect and analyze data in relation to distressed businesses that apply to the Courts for restructuring purposes or, as a last resort, for liquidation.

Accessible Geoparks in Iberia: a Challenge to Promote Geotourism and Education for Sustainable Development

This work aims at providing an overview regarding accessibility conditions for people with functional diversity among the 15 UNESCO Global Geoparks (UGGs) located in the Iberian Peninsula—4 in Portugal and 11 in Spain—from the point of view of a disabled user wishing to visit a geopark. Website information and a questionnaire composed of closed and multiple choice questions directly administrated to the geopark managers were used aiming at inquiring about facilities provided to people requiring adapted access conditions, including mobility, vision, hearing and cognitive dimensions of access both under the aim of geotourism activities or in the frame of educational programmes. Results show that Iberian UGGs display several facilities for the development of geotourism and education that meet the needs of people with functional diversity. Accessibility facilities to receive people with physical impairments are common, but sensory and communication access facilities are scarce. Geoparks’ websites generally lack information concerning facilities for special groups, and the web design does not meet the needs of people that have difficulties with written word and speech. The constraints on implementation of programmes aimed at disabled visitors can be partially overcome if geoparks’ leaders seek to integrate partners that currently develop activities for persons with disabilities. Geodivulgar (an innovation project from the Complutense University) and Science without Barriers (an association; Ciencia sin Barreras in Spanish) are pioneer initiatives for the outreach of geology among people with functional diversity in Spain, which currently develops activities and resources that can be of great help to enlarge the geoparks’ offer about geotouristic tours and/or educational programmes for disabled visitors. The acquired experience at the Basque Coast UGG can be of great help for other partners of the UGG Network to fully fulfil their roles as agents of sustainable development through geotourism and education for all.

Cri du Chat syndrome: Characteristics of 73 Brazilian patients.

Cri du Chat syndrome (CdCS) is a genetic syndrome caused by deletions in the short arm of chromosome 5. Although the main clinical features of CdCS are well known, the neurocognitive and behavioural characteristics of the phenotype are rarely described in detail in the literature. In this study, we analysed the main phenotypic features of CdCS from a parental perspective. A questionnaire was sent to 700 Brazilian families that were registered in the Brazilian Association of CdCS. The questions involved specific domains of CdCS, such as pregnancy and birth conditions, recurrence of the disease in the family, current major health problems, and aspects of cognitive development. In total, 73 questionnaires were completed: 44 females and 29 males, ranging from 9.5months old to 40years old (mean=13.8 years; median=12 years). Most of the parents noticed the typical cat-like cry at birth (94.4%). The age at diagnosis of CdCS ranged from the time of birth to 180months (mean=14months; median=6months), while one case was diagnosed during pregnancy. In all of the cases, the diagnosis of CdCS was made by G-banding karyotype analysis. In 66.2% of the cases, the parents underwent cytogenetic investigation. A total of 52.1% of the parents answered that they did not remember what the recurrence risk of CdCS was in their family. The main health problems that were reported were as follows: swallowing problems (80.3%), feeding problems (80.3%), congenital heart disease (31.5%), spine abnormalities (28.8%), and neurological symptoms (20.5%), including seizures (11%). The behavioural problems that were reported were as follows: aggressive behaviour, stereotypies, anxiety, phobias, and genital manipulation/masturbation. Neurodevelopmental delay was reported in all of the cases. Independent walking was achieved in 72.2% of the patients. Approximately 50% of the patients never presented expressive language, and most of the patients are dependent on others for their daily activities. The questionnaire was a pioneer initiative in the CdCS support group, and the answers used in this study can improve the health care assistance to these patients because they focus attention on the demands from a parental perspective. In addition, nearly half of the families stated that they did not remember information regarding recurrence risk, which reinforces the importance of genetic counselling follow-up and the need for the expansion of genetic services in Brazil.

Bio‐ORACLE v2.0: Extending marine data layers for bioclimatic modelling

AbstractMotivationThe availability of user‐friendly, high‐resolution global environmental datasets is crucial for bioclimatic modelling. For terrestrial environments, WorldClim has served this purpose since 2005, but equivalent marine data only became available in 2012, with pioneer initiatives like Bio‐ORACLE providing data layers for several ecologically relevant variables. Currently, the available marine data packages have not yet been updated to the most recent Intergovernmental Panel on Climate Change (IPCC) predictions nor to present times, and are mostly restricted to the top surface layer of the oceans, precluding the modelling of a large fraction of the benthic diversity that inhabits deeper habitats. To address this gap, we present a significant update of Bio‐ORACLE for new future climate scenarios, present‐day conditions and benthic layers (near sea bottom). The reliability of data layers was assessed using a cross‐validation framework against in situ quality‐controlled data. This test showed a generally good agreement between our data layers and the global climatic patterns. We also provide a package of functions in the R software environment (sdmpredictors) to facilitate listing, extraction and management of data layers and allow easy integration with the available pipelines for bioclimatic modelling.Main types of variable containedSurface and benthic layers for water temperature, salinity, nutrients, chlorophyll, sea ice, current velocity, phytoplankton, primary productivity, iron and light at bottom.Spatial location and grainGlobal at 5 arcmin (c. 0.08° or 9.2 km at the equator).Time period and grainPresent (2000–2014) and future (2040–2050 and 2090–2100) environmental conditions based on monthly averages.Major taxa and level of measurementMarine biodiversity associated with sea surface and epibenthic habitats.Software formatASCII and TIFF grid formats for geographical information systems and a package of functions developed for R software.

Processo seletivo público para escolha de secretário municipal: análise da experiência da cidade de Londrina, PR

Neste trabalho discute-se sobre a experiência de seleção pública para o cargo de Secretário Municipal de Educação de Londrina, no Paraná, enfatizando a relevância de dois aspectos essenciais: o tema da alta direção pública, ainda pouco explorado pela literatura no País, e o sucesso do estabelecimento de um modelo de seleção baseado na aferição prévia das competências de gestão como insumo para subsidiar nomeações políticas de natureza discricionária. Na análise dessa iniciativa pioneira, demonstra-se o diálogo existente entre a experiência de Londrina e a literatura sobre o tema da alta direção pública, explorando três dimensões: o conceito de dirigente ou líder público, a caracterização dos espaços institucionais em que atuam e o papel das competências gerenciais como eixo central para a realização de processos de escolha desses profissionais. No trabalho também se detalham as etapas que constituíram o processo de seleção em Londrina e se indicam os atores envolvidos nesse processo. Em seguida, relacionam-se os principais avanços e desafios que caracterizam um processo seletivo dessa natureza e se oferecem recomendações orientadas a gestores públicos que almejem replicar a iniciativa. A metodologia adotada para a análise do caso foi a de observação participante, considerando o envolvimento dos autores na concepção e implantação dessa experiência. Palavras-chave: Gestão de pessoas. Seleção. Processo seletivo. Competências. Dirigentes públicos.

Using evidence-informed policies to tackle overweight and obesity in Chile

ABSTRACTOverweight and obesity are a global epidemic with rates having risen to alarming levels in both developed and developing countries. Chile has been no exemption, with sharp increases in obesity prevalence, especially among school-age children. This paper describes the policy actions and strategies implemented to tackle this major public health concern in Chile over the last 10 years, and highlights the main challenges and nuances of the process. Chile has taken policy action that includes front-of-package labelling, advertising regulations, and school-food restrictions. New policies focus on the social determinants of health as they relate to food environments and people’s behavior. These actions are not only suitable to the current context in Chile, but are also supported by the best available scientific evidence. Moreover, the implementation of these policies has produced a broad debate involving public institutions and the food industry, with discussions issues ranging from property rights to trade barriers. Despite some differences among stakeholders, a valuable political consensus has been achieved, and several international organizations are eager to evaluate the impact of these pioneer initiatives in Latin America.

Why Implementing Integrated Care is so much harder than designing it: experience in North West London. England

Introduction: Delivering more integrated care has long been a priority in England. Both care quality and cost effectiveness have been seen to require effective collaboration between local government and the NHS. Despite repeated national programmes and some localised progress, success has never been universalised. The recent Coalition Government launched several initiatives to enable integrated care to ‘become the standard model for everyone with health and care needs’ (Hunt and Lamb 2013). Among these initiatives was the establishment of ‘integration pioneers’ in the ‘most ambitious and visionary areas’ to ‘help to get the ball rolling’ and share ‘every lesson learned’. In return, central government promised support to remove national barriers to integration. The Whole Systems Integrated Care (WSIC) programme in North West London (NWL) was the largest pioneer in terms of population (2.4million) and partners (31 agencies). This paper reports on an initial evaluation conducted by its authors between January 2014 and May 2015. Theory/Methods: A primarily qualitative evaluation with a strong formative element was commissioned to provide ongoing feedback and independent assessments of: - How WSIC was designed; - Stakeholder involvement; - Early implementation of pilot schemes; - How far WSIC appeared on track to meet its objectives. Data were collected through documentary analysis, non-participant observation, 73 interviews, workshops, a focus group, and two web-based surveys. The interviews and focus group were recorded, transcribed and analysed using NVivo. Emerging findings were fed back in round table sessions to help structure reflections on progress. Results: - WSIC built on lessons identified by an earlier evaluation in NWL (Curry et al 2013). It was ambitious and well resourced from funds pooled by the eight CCGs: £14.9m over the first two years of which most (£7.9m) was spent on management consultancy to address barriers to integration and lead a co-design. - A programme team developed a timetabled process for integrated care to become ‘business as usual’ from April 2015. A key principle was to save time and resources by addressing problems once rather than in each of eight local areas. - The initial co-design phase was completed largely on time. However, the programme was more than a year behind schedule when our evaluation ended and had yet to deliver significant service change. Only two of eight early adopter projects had begun operations by April 2015. - By late April 2015, the WSIC programme was seen to be approaching a ‘tipping point’. Changes in the programme’s leadership created concerns about its strategic management capacity and the need to demonstrate its ability to deliver change was considered increasingly urgent. Discussion: - A complex mix of enablers and barriers with local and national origins was considered responsible for the relative success of the design stage and the much slower progress subsequently. Co-design, inclusivity (especially of lay partners), an openness to learning, a clear, timetabled route map, together with roles of the programme management team and its resources were seen as valuable enablers. - However, the transition from planning to implementation and roll out of Early Adopters proved more difficult than anticipated. While some of the barriers could be addressed locally, others ultimately required action by central government. Among the former, the programme struggled to find the balance between, for example: collective leadership and local autonomy; integrated commissioning and integrated provision; NHS leadership and local authority engagement; local variation and programme-wide consistency; investment in design and support for ongoing implementation and change. - Managing such tensions is integral to such a programme and requires capabilities in systems leadership. NHS leaders have relatively little training or experience in managing systems as opposed to organisations.(Timmins, 2015). - National barriers slowing progress included difficulties in: securing data-sharing and information governance; developing payment and accountability systems aligned with integrated care objectives; enabling local government to be more equal partners especially when their finances were cut more heavily than the NHS; maintaining acute provider viability while reducing hospital admissions; balancing completion and collaboration. - Many of these barriers were identified before the Pioneer initiative but, despite the national commitment to remove them, little progress has yet been made. Conclusion: The distinction between local and national barriers and facilitators is an analytical one. In practice, they are interdependent. The NWL case shows the importance of developing effective local systems leadership capabilities within a national framework structured to support such leadership. It also highlights the need to ensure integration barriers are removed during the design stage and that the transition from design to delivery is planned and supported.

The Pioneer Initiative: A New Era in Chinese Research.

A brief description of the background, rational and goals of the Pioneer Initiative (PI), a reform program at the Chinese Academy of Sciences (CAS), is provided. The harmonizing nature and shared missions between this initiative and the CAS 135 Strategy that is concurrently occuring are also discussed. Both initiatives aim to address fundamental challenges and bring CAS to a new high in science excellence and innovation.