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Best practice guidelines for molecular genetic diagnosis of cystic fibrosis and CFTR-related disorders – updated European recommendations

Dequeker, Els; Stuhrmann, Manfred; Morris, Michael A; Casals, Teresa; Castellani, Carlo; Claustres, Mireille; Cuppens, Harry; des Georges, Marie; Ferec, Claude; Macek, Milan; Pignatti, Pier-Franco; Scheffer, Hans; Schwartz, Marianne; Witt, Michal; Schwarz
Fonte: Nature Publishing Group Publicador: Nature Publishing Group
Tipo: Artigo de Revista Científica
EN
Relevância na Pesquisa
45.8%
The increasing number of laboratories offering molecular genetic analysis of the CFTR gene and the growing use of commercial kits strengthen the need for an update of previous best practice guidelines (published in 2000). The importance of organizing regional or national laboratory networks, to provide both primary and comprehensive CFTR mutation screening, is stressed. Current guidelines focus on strategies for dealing with increasingly complex situations of CFTR testing. Diagnostic flow charts now include testing in CFTR-related disorders and in fetal bowel anomalies. Emphasis is also placed on the need to consider ethnic or geographic origins of patients and individuals, on basic principles of risk calculation and on the importance of providing accurate laboratory reports. Finally, classification of CFTR mutations is reviewed, with regard to their relevance to pathogenicity and to genetic counselling.

Tanzania - The Rural and Micro Financial Services Project

Mohan, P. C.
Fonte: World Bank, Washington, DC Publicador: World Bank, Washington, DC
Relevância na Pesquisa
35.91%
Findings Info briefs reports on good practice in ongoing operational, economic and sector work carried out by the World Bank and its member governments in the Africa Region. This issue reports on the Tanzania Rural and Micro Financial Services Project. The project was designed as a Learning and Innovation initiative (2000-2004) with support from an IDA credit of US$2 million. Its objectives were (i) the development of a common policy framework, based on internationally recognized best practices, for rural and microfinance initiatives in the country which would establish an enabling environment for rural and microfinance and increase the quality and returns of subsequent investments by the government agencies and other donors; (ii) increasing the level of knowledge and skills within the industry; and (iii) instituting a program of systematic tracking and analyzing of all related initiatives against a set of common criteria. This info brief gives information on the project impacts as well as lessons learned.

Guiding Principles for Successful Reforms of Urban Water Supply and Sanitation Sectors

Locussol, Alain R.; Fall, Matar
Fonte: World Bank, Washington, DC Publicador: World Bank, Washington, DC
Relevância na Pesquisa
45.84%
The note proposes a methodology for assessing the accountability framework of an urban water supply and sanitation (WSS) sector that it defines as the set of actors, mandates, contractual arrangements between actors, and instruments used by actors to implement their mandates. The accountability framework focuses on the five key functions of the urban WSS sector that are policy formulation, asset management and infrastructure development, service provision, financing, and regulation of the service. The note recommends that particular attention be paid to incentives, either productive or counterproductive, that could influence the performance of the WSS service. It also suggests identifying vested interests likely to be affected by reforms, with a focus on those engaged in fraud and corruption, as they could actively lobby against reforms which, if successfully implemented, would affect their revenues. The note focuses primarily on the provision of official piped WSS service, but it also recognizes that when a central service provides limited coverage or poor performance it can forfeit its monopoly status...

Agency of Republic of Kazakhstan on Statistics : Statistical Master Plan 2008-2015

World Bank
Fonte: Washington, DC Publicador: Washington, DC
EN_US
Relevância na Pesquisa
45.91%
The mission of the Agency of the Republic of Kazakhstan on Statistics (ARKS) is to provide the Kazakh government, businesses and individuals with reliable and accurate statistics collected and produced in line with the international methodology and best practice. A Statistical Master Plan (SMP) is the internationally accepted, standard starting point for comprehensive improvement activities. With the participation of data providers, users, other national stakeholders and international donors, the ARKS has produced this SMP for the period up to 2015. The SMP builds upon existing national strategies and capabilities. It establishes and prioritizes data needs and sources. The SMP has two objectives: (1) present a strategy for the Kazakh National Statistical System (KNSS) development over the period to 2008-2015 and how it can be implemented; (2) provide a baseline assessment of the KNSS as the basis for strategy formulation. The SMP provides the basis and justification for investments by the ARKS and other government statistical agencies in improvements to the statistical infrastructure and program. It includes information that is vital to senior managers in preparing budget requests. The SMP was prepared by the ARKS with the assistance of a team of international experts funded by the World Bank who worked in conjunction with ARKS senior management and other stakeholders. The preparation process involved intensive consultation and input from the full range of stakeholders. In addition it benefited from close cooperation from a concurrent KNSS Global Assessment by a UNECE Study Group.

Global Good Practice in Incubation Policy Development and Implementation

World Bank
Fonte: Washington, DC Publicador: Washington, DC
EN_US
Relevância na Pesquisa
56.04%
This paper was based on a desk review of the literature relating to best practice in public policy supporting business incubation, supplemented by four national case studies covering Brazil, Ma-laysia, New Zealand and South Africa. These country studies were prepared through engage-ment of stakeholders, site visits and other sources of primary and secondary information collection. In the context of the study, we focused on best practice in policy development, meaning that public bodies should identify clear objectives and goals to be achieved within the resources avail-able and take steps to measure and assess what has actually been achieved, allowing changes to overcome unexpected barriers, as well as to identify and disseminate best practices to improve overall performance.

Accountability in State Noncommercial Organizations in Armenia : An Approach

Vatyan, Arman
Fonte: World Bank, Washington, DC Publicador: World Bank, Washington, DC
EN_US
Relevância na Pesquisa
35.97%
A World Bank-supported project in Armenia was successful in developing a control framework that balances the need to increase the transparency and accountability of the country s state noncommercial organizations (SNCOs), while also recognizing their financial, administrative, and managerial independence. An innovative approach involving the use of earlier results to guide later ones was used to address the dire need for SNCOs, which account for 70 percent of the total number of state organizations, to make greater efforts to responsibly administer and safeguard the government s assets. The aim was to reduce the market distortions caused by SNCOs that are engaged in significant commercial activities by addressing SNCOs heterogeneity and the need for specific fiduciary control requirements for distinct groups.

Technical Assessment of Open Data Platforms for National Statistical Organisations

World Bank Group
Fonte: World Bank, Washington, DC Publicador: World Bank, Washington, DC
EN_US
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35.94%
The term quot;open dataquot; is generally understood to be data that are made available to the public free of charge, without registration or restrictive licenses, for any purpose whatsoever (including commercial purposes), in electronic, machine-readable formats that ensure data are easy to find, download and use. National Statistics Offices (NSOs) have the potential to play a pivotal role in the implementation of open data initiatives. As producers and curators of data, the objective of making high quality data more accessible and usable is consistent with their guiding principles. NSOs indicate, in research conducted in support of this report, that one of the difficulties they encounter is that the technology they use to publish - or electronically distribute - data for public use is not compatible with open formats. They also indicate that common software packages used for open data portals do not accommodate the data formats and metadata they produce. Two key concerns related to data dissemination products are addresses: (1) Can such products designed primarily for NSOs satisfy requirements for an open data initiative?; and (2) Can such products designed primarily for open data satisfy the requirements of NSOs? Furthermore...

An Analytical Toolkit for Support to Contract Farming

World Bank Group
Fonte: Washington, DC Publicador: Washington, DC
EN_US
Relevância na Pesquisa
45.94%
Over the past century or so, a wide assortment of pre-harvest agreements, joint ventures, deals, and pledges that can be termed contract farming have been brokered between farmers and buyers. During the 1980s and 1990s, contract farming was frequently criticized as a potentially exploitative arrangement, which favored the more powerful buyer and left the small-scale farmer and the environment vulnerable to abuse. More recently, there is renewed interest from policy makers and their development partners in contract farming as a means of leveraging the recent wave of large-scale investment in land and agriculture to include small-scale farmers and to link them to new market opportunities. The establishment of contract farming becomes a means to link small-scale farmers to markets, which may otherwise be inaccessible for reasons of distance, standards, processing, or any of the other disconnections and impediments that hold them back. However, there have been few attempts to evaluate donor-supported contract farming projects...

Implementing Electronic Business Registry Services

Lewin, Anat; Klapper, Leora; Lanvin, Bruno; Satola, David; Sirtaine, Sophie; Symonds, Richard
Fonte: Banco Mundial Publicador: Banco Mundial
Tipo: Trabalho em Andamento
EN_US
Relevância na Pesquisa
45.88%
The objective of this paper is to share the experiences and good practices of early business registry reformers who implemented web-enabled and automated electronic business registries (e-BRs). These lessons are hoped to be of help to EU New Member countries as they embark on delivering EU-conformant e-BRs. At the same time, policymakers in other developing countries may also find these lessons of use. This paper cites examples of good practices rather than best practices. As elsewhere in the development agenda, solutions that have worked well in some countries may not work in other local circumstances. In the case of e-BRs, success depends on a broader set of reforms; as will be discussed in a subsequent chapter, e-BRs require a supportive legal and regulatory infrastructure, such as electronic signature laws and document authentication. A needs assessment and analysis of the options in the local country context need to be conducted in order to find the most relevant best practice options for a specific country. Nevertheless...

Best practice rail safety regulation

Gunningham, Neil
Fonte: Universidade Nacional da Austrália Publicador: Universidade Nacional da Austrália
Tipo: Working/Technical Paper Formato: 350449 bytes; 367 bytes; application/pdf; application/octet-stream
EN_AU
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65.96%
Regulating rail safety, and in particular, achieving regulatory best practice, is no easy task. The disaggregation and privatisation of the rail system, and the broader industry restructuring that took place in the 1990s have produced an industry that is structurally diverse, characterised by technological and corporate complexity and subject to competitive pressures as never before. Moreover, the multiplicity of different rail organisations that has emerged from this process – ranging from large, sophisticated commercial operators through to small heritage railways - has resulted in considerable variation in available resources, skills, experience and understanding, and in safety performance itself. There is much evidence to suggest that there are serious deficiencies both in the rail industry’s approach to safety and in the regulatory response to it, although the nature of these deficiencies varies considerably from State to State. In New South Wales, the Glenbrook and Waterfall accidents highlighted a series of major problems that (according to Hopkins analysis of the Glenbrook enquiry) include: a rule focussed culture [which] tended to deaden awareness of risks; the organisational and occupationally fragmentation of the railway system; a powerful culture of punctuality - of ‘on time running’ - whose side effect was to undermine safety; a railway culture that was profoundly risk blind...

Sustainable cities principles, policy and practice in the direction of urban planning in Australia

Fletcher, Tully
Fonte: Universidade Nacional da Austrália Publicador: Universidade Nacional da Austrália
Tipo: Relatório
Relevância na Pesquisa
55.9%
This report considers current best practice in sustainable urban planning and measures Australian planning trends and governance frameworks against that standard. Best practice in sustainable urban planning Planning authorities should make the environmental footprint of proposed urban development and redevelopment a primary consideration. The environmental footprint of any given development should - as far as practicable - be minimised so as to approach or achieve a zero net affect on the local, regional and global natural environment; Urban design should seek to minimise carbon emissions and the use of non-renewable resources, maximise energy efficiency, and deal with industrial and residential waste in a cyclical fashion. Planning authorities should seek to create a built environment and public infrastructure which not only minimises ecological impact, but maximises social and economic outcomes for the affected jurisdiction. The benchmark model for sustainable urban design is one which combines high-density development and defined urban boundaries with a decentralised pattern of settlements linked with rapid, low-emission public and freight transit. Development should be focused around planned or existing transit routes...

Theory and practice of EC external trade law and policy

LEAL ARCAS, Rafael
Fonte: Instituto Universitário Europeu Publicador: Instituto Universitário Europeu
Tipo: Tese de Doutorado
EN
Relevância na Pesquisa
35.91%
Both the European Community (EC) and its Member States agree that it is in their best interest to coordinate their action vis-à-vis the rest of the world in international trade agreements. Theory and Practice of EC External Trade Law and Policy looks at the intricacies of the institutional framework of EC trade law, and with special emphasis on services trade, examines the law and practice of EC external trade relations from a policy, economic, legal and an overarching European constitutional perspective. The objective of the author’s analysis is not only to find ways to nurture and preserve the unitary character of EC external trade relations in areas of shared competence between EU Member States and EU institutions, but also to understand the management of the EC’s external trade relations. The book begins with an analysis of the evolution of the EC common commercial policy, through which the author examines the checks and balances at the micro, meso and macro levels. The author then proceeds to analyse the problems faced by the EU in its external relations and the legal complexity of mixed agreements. This unique legal phenomenon is tackled from an intra-EC perspective as well as from an extra-EU perspective taking into account various implications for third parties. The major EU institutions are examined: the Commission as the negotiator of international trade agreements...

European Coexistence Bureau. Best Practice Documents for coexistence of genetically modified crops with conventional and organic farming. 3. Coexistence of genetically modified maize and honey production

RIZOV IVELIN ILIEV; RODRIGUEZ CEREZO Emilio
Fonte: Publications Office of the European Union Publicador: Publications Office of the European Union
Tipo: EUR - Scientific and Technical Research Reports Formato: Online
ENG
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45.84%
The Technical Working Group (TWG) for Maize of the European Coexistence Bureau (ECoB) analysed in 2010 the best practices for coexistence between GM maize crop production with non-GM maize . In this document the analysis is extended to the coexistence between GM maize crop production and honey production in the EU. The TWG assessed if any further coexistence measure to those currently recommended in the previous document was required to limit adventitious presence of GM maize pollen in honey avoiding economic loses for producers. The terms of reference for this review are presented in Section 1. An overview of the structure of the honey-producing sector in Europe is given in Section 2. The EcoB TWG maize held two meetings in June and November 2012 and examined state-of-art-knowledge from scientific literature, study reports and empirical evidence provided by numerous finished and ongoing studies looking at the factors determining the presence of pollen in general or maize pollen (even specifically GM maize pollen) in samples of EU produced honey. In addition to biological factors (related to honeybee behaviour and maize pollen characteristics) the TWG also analysed existing mandatory quality standards that impact the eventual presence of pollen in commercial honey. The review of this information (coming from a total of 132 references) is presented in a structured manner in Section 3 of this document. Finally...

Contract Logistics Support (CLS) in the twenty first century : a comparative analysis of CLS in the T-45 program using NAMP/4790 procedures vice commercial best practices

Haberthur, Michael T.
Fonte: Monterey, California. Naval Postgraduate School Publicador: Monterey, California. Naval Postgraduate School
Tipo: Tese de Doutorado
EN_US
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45.96%
This thesis evaluates the current United States Navy (U.S.N.) Contract Logistics Support (CLS) arrangement on the T - 45TS program and compares it to commercial best practices. The objective was accomplished by evaluating the existing system and using technical functional and operational analyses to determine the feasibility of improving USN practice in contract methodology and language for future CLS implementations in general and on the T - 45TS program in particular. Using archival research, interviews, and site visits, this study identifies the current system and state of the art commercial best practices in service contracts and contracting/quality control oversight applicable to USN CLS implementation. Broad findings include: competitively bidding a contract without owning the engineering data rights may be costly in the long run; that infusion of best commercial practices and international quality standards vice strict compliance with government practices provides an opportunity to decrease life cycle costs through reduced oversight and state of the art management techniques and processes. Further findings and recommendations on specifically improving the T - 45TS program are included in the areas of; Improving Contract Practices Personnel Qualifications...

Cure Defense Enterprise IT Acquisition with a Dose of its Own Medicine 



Gunderson, Chris
Fonte: Escola de Pós-Graduação Naval Publicador: Escola de Pós-Graduação Naval
Tipo: Artigo de Revista Científica
Relevância na Pesquisa
36.05%
Chris Gunderson is a Research Associate at the Naval Postgraduate School. He is the principal investigator of the Open Enterprise Information System (OEIS) research initiative. This project sponsored by the Undersecretary of Defense for Intelligence and executed in the Northern Virginia. The project objective is to help the government improve its flawed information technology acquisition process through four key activities: Establish a collaborative network of government, industry, and academic experts who have succeeded at some aspect of OEIS; Study Internet successful stories and distill the lessons learned; Embed lessons learned into familiar government acquisition artifacts; Work with early adopting pilot projects to verify, validate, refine, and document best practices; Gunderson GMU/AFCEA 2010 C4I Symposium; This paper explains how commercial best practice can actually be mapped to existing bureaucratic artifacts in the Defense acquisition process...thus "sneaking in" much greater efficiency and effectiveness.; The Defense Community’s inability to realize its “enterprise” vision for the Global Information Grid (GIG) has reached crisis. The Defense Science Board (DSB) reports that a new acquisition process, aligned with commercial best practice is required. Commercial best practice is all about leveraging economy of scale to achieve better speed to better capability than the competition. Successful firms subscribe to a common model for value-based evolutionary development. The iPhone is good metaphor for that model. The JCIDS process can support the same model by morphing existing serial...

Analysis of design-build processes, best practices, and applications to the Department of Defense

Cantrell, Kim S.
Fonte: Monterey, California. Naval Postgraduate School Publicador: Monterey, California. Naval Postgraduate School
Formato: xiv, 71 p. : ill. ; 28 cm.
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56%
MBA Professional Report; The Federal Government's preference for the acquisition of commercial items was placed into law under Public Law 103-355, Federal Acquisition Streamlining Act of 1994. Acquisition policies were established that more closely resembled those of the commercial marketplace and the law encouraged the acquisition of commercial supplies and services. This law did not extend to the acquisition of design-build construction. Acquisition policy regarding Government design-build should be analyzed to determine which best commercial processes/practices may be applied to the acquisition of Government design-build. Design- Build (DB) is defined as a project delivery system in which the owner contracts with, and holds responsible, one single entity for both design and construction of a project. This method differs from the traditional design-bid-build (DBB) approach in which the owner contracts with an architect to design the project (prepare drawings and specifications) under a design contract and then competitively bids the project among construction contractors to build the facility. With NAVFAC's mandate, that by the end of Fiscal Year (FY) 07, 75% of capital improvement projects above $7 50,000 will be accomplished by design-build acquisition...

Application of a commercial product development practice to military C4I systems product development

Hoyle, Jeffery W.
Fonte: Monterey, California. Naval Postgraduate School Publicador: Monterey, California. Naval Postgraduate School
Tipo: Tese de Doutorado Formato: xii, 87 p. : ill. ;
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35.91%
Approved for public release, distribution is unlimited; Successful commercial companies understand that customers are the real experts with regard to their products and services. Bringing customer experiences right into the design shop allows development of best-selling commercial products and services. Companies such as L.L. Bean, Inc. immerse themselves in their customer's experiences during new product development. They travel to their customer's location and listen to them face to face to get the best possible input for essential product requirements and new design ideas. Currently, most military C4I systems product development does not make effective use of customer input. Systems are developed and fielded in accordance with Department of Defense regulations that provide insufficient mechanisms for users to influence product requirements and design. C4I system program managers need additional tools to obtain and translate user needs into system requirements and designs. Harvard Business School has developed an educational program aimed at redesigning product/service development based on the L.L. Bean model. This thesis applies the tenets of that program to submarine C4I systems development and identifies obstacles to and lessons learned from its application to military product development.; Commander...

Corporate Governance Country Assessment : Republic of Lithuania

World Bank
Fonte: Washington, DC Publicador: Washington, DC
ENGLISH; EN_US
Relevância na Pesquisa
36.02%
This assessment benchmarks the Lithuanian corporate governance system against the OECD Principles of Corporate Governance and highlights a number of areas where Lithuania's corporate governance system can be strengthened. Lithuania has already invested considerable resources in upgrading its legislation to meet EU Directives, and the legislative and regulatory framework dealing with corporate governance issues is quite robust. The policy recommendations can be grouped under three broad categories: legislative reform, institutional strengthening and voluntary/private initiatives. The legislative and regulatory framework dealing with corporate governance practices has undergone substantial change. The most serious problem is compliance and enforcement. While the assessment highlights several areas where Lithuania's corporate governance system could be strengthened, the priority should be given to the enforcement of existing laws. This report promotes private sector initiatives and capacity building to follow up on the legislative progress on corporate governance reform. It recommends the development of a Lithuanian or regional voluntary code of best practice in corporate governance. The code should be prepared by a task force coordinated by the LSE and made up of public and private sector representatives. In addition...

Sierra Leone : Accounting and Auditing

World Bank
Fonte: Washington, DC Publicador: Washington, DC
Tipo: Economic & Sector Work :: Accounting and Auditing Assessment (ROSC); Economic & Sector Work
ENGLISH; EN_US
Relevância na Pesquisa
45.84%
This report provides an assessment of accounting and auditing practices in Sierra Leone with reference to the International Financial Reporting Standards (IFRS) requirements issued by the International Accounting Standards Board, and International Standards on Auditing (ISA) issued by the International Federation of Accountants. This assessment is positioned within the broader context of the country's institutional framework and capacity needed to ensure the quality of corporate financial reporting. Efforts are necessary for strengthening the capacity of the regulators and ensuring compliance with applicable standards and codes. The accounting and auditing practices in Sierra Leone need to develop in line with a growing economy, as well as with international best practice. With the exception of banks and similar financial institutions, there is no legal mandate for other corporate entities to follow IFRS in preparation of financial statements and ISA in conducting audits. There are varying compliance gaps in both accounting and auditing practices. These gaps are likely to stem from lack of clearer understanding of professional accountants, inadequate technical capacities of the regulators, absence of implementation guidance, lack of independent oversight of the auditing profession...

Corporate Governance Country Assessment : Ukraine

World Bank
Fonte: Washington, DC Publicador: Washington, DC
Tipo: Economic & Sector Work :: Accounting and Auditing Assessment (ROSC); Economic & Sector Work
ENGLISH; EN_US
Relevância na Pesquisa
35.94%
This report assesses Ukraine's corporate governance policy framework and enforcement and compliance practices. It highlights recent improvements in corporate governance regulations, makes policy recommendations, and provides investors with a benchmark against which to measure corporate governance in Ukraine. Several developments have worked to improve the corporate governance environment in recent years, including high levels of economic growth and a growing demand for capital growth in Ukrainian industry. The equity market has boomed, and over 45 companies have issued depository receipts abroad. A corporate governance code was issued in 2003, and a number of private-sector and donor initiatives have continued to work to promulgate the code and introduce good practice at the company level. Several reforms have been carried out, including the passage of a new securities law. The report recommends: (i) a variety of legal reforms, including a revised company law that would be enacted by the Parliament, (ii) institutional strengthening, including focusing the enforcement activities of the Securities and Stock Market State Commission (SSMSC) on large and traded companies, and (iii) enhanced listing requirements for the top tier of the Persha Fondova Totgovelna System (PFTS)...