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Beyond the HIPAA Privacy Rule: Enhancing Privacy, Improving Health Through Research

by Institute of Medicine

In the realm of health care, privacy protections are needed to preserve patients' dignity and prevent possible harms. Ten years ago, to address these concerns as well as set guidelines for ethical health research, Congress called for a set of federal standards now known as the HIPAA Privacy Rule. In its 2009 report, Beyond the HIPAA Privacy Rule: Enhancing Privacy, Improving Health Through Research, the Institute of Medicine's Committee on Health Research and the Privacy of Health Information concludes that the HIPAA Privacy Rule does not protect privacy as well as it should, and that it impedes important health research.

Emerging Technologies To Benefit Farmers In Sub-saharan Africa And South Asia

by National Research Council of the National Academies

Increased agricultural productivity is a major stepping stone on the path out of poverty in sub-Saharan Africa and South Asia, but farmers there face tremendous challenges improving production. Poor soil, inefficient water use, and a lack of access to plant breeding resources, nutritious animal feed, high quality seed, and fuel and electricity-combined with some of the most extreme environmental conditions on Earth-have made yields in crop and animal production far lower in these regions than world averages. Emerging Technologies to Benefit Farmers in Sub-Saharan Africa and South Asia identifies sixty emerging technologies with the potential to significantly improve agricultural productivity in sub-Saharan Africa and South Asia. Eighteen technologies are recommended for immediate development or further exploration. Scientists from all backgrounds have an opportunity to become involved in bringing these and other technologies to fruition. The opportunities suggested in this book offer new approaches that can synergize with each other and with many other activities to transform agriculture in sub-Saharan Africa and South Asia.

Protecting Individual Privacy in the Struggle Against Terrorists: A Framework for Program Assessment

by National Research Council of the National Academies

All U.S. agencies with counterterrorism programs that collect or "mine" personal data -- such as phone records or Web sites visited -- should be required to evaluate the programs' effectiveness, lawfulness, and impacts on privacy. A framework is offered that agencies can use to evaluate such information-based programs, both classified and unclassified. The book urges Congress to re-examine existing privacy law to assess how privacy can be protected in current and future programs and recommends that any individuals harmed by violations of privacy be given a meaningful form of redress. Two specific technologies are examined: data mining and behavioral surveillance. Regarding data mining, the book concludes that although these methods have been useful in the private sector for spotting consumer fraud, they are less helpful for counterterrorism because so little is known about what patterns indicate terrorist activity. Regarding behavioral surveillance in a counterterrorist context, the book concludes that although research and development on certain aspects of this topic are warranted, there is no scientific consensus on whether these techniques are ready for operational use at all in counterterrorism.

The Potential Impact Of High-end Capability Computing On Four Illustrative Fields Of Science And Engineering

by National Research Council of the National Academies

Many federal funding requests for more advanced computer resources assume implicitly that greater computing power creates opportunities for advancement in science and engineering. This has often been a good assumption. Given stringent pressures on the federal budget, the White House Office of Management and Budget (OMB) and Office of Science and Technology Policy (OSTP) are seeking an improved approach to the formulation and review of requests from the agencies for new computing funds. This book examines, for four illustrative fields of science and engineering, how one can start with an understanding of their major challenges and discern how progress against those challenges depends on high-end capability computing (HECC). The four fields covered are: atmospheric science astrophysics chemical separations evolutionary biology. This book finds that all four of these fields are critically dependent on HECC, but in different ways. The book characterizes the components that combine to enable new advances in computational science and engineering and identifies aspects that apply to multiple fields.

THE NATIONAL ACADEMIES SUMMIT ON America's Energy Future: SUMMARY OF A MEETING

by National Research Council of the National Academies

There is a growing sense of national urgency about the role of energy in long-term U.S. economic vitality, national security, and climate change. This urgency is the consequence of many factors, including the rising global demand for energy; the need for long-term security of energy supplies, especially oil; growing global concerns about carbon dioxide emissions; and many other factors affected to a great degree by government policies both here and abroad. On March 13, 2008, the National Academies brought together many of the most knowledgeable and influential people working on energy issues today to discuss how we can meet the need for energy without irreparably damaging Earth's environment or compromising U.S. economic and national security-a complex problem that will require technological and social changes that have few parallels in human history. The National Academies Summit on America's Energy Future: Summary of a Meeting chronicles that 2-day summit and serves as a current and far-reaching foundation for examining energy policy. The summit is part of the ongoing project 'America's Energy Future: Technology Opportunities, Risks, and Tradeoffs,' which will produce a series of reports providing authoritative estimates and analysis of the current and future supply of and demand for energy; new and existing technologies to meet those demands; their associated impacts; and their projected costs. The National Academies Summit on America's Energy Future: Summary of a Meeting is an essential base for anyone with an interest in strategic, tactical, and policy issues. Federal and state policy makers will find this book invaluable, as will industry leaders, investors, and others willing to convert concern into action to solve the energy problem.

A Review of the DOE Plan for U.S. Fusion Community Participation in the ITER Program

by National Research Council of the National Academies

ITER presents the United States and its international partners with the opportunity to explore new and exciting frontiers of plasma science while bringing the promise of fusion energy closer to reality. The ITER project has garnered the commitment and will draw on the scientific potential of seven international partners, China, the European Union, India, Japan, the Republic of Korea, Russia, and the United States, countries that represent more than half of the world's population. The success of ITER will depend on each partner's ability to fully engage itself in the scientific and technological challenges posed by advancing our understanding of fusion. In this book, the National Research Council assesses the current U.S. Department of Energy (DOE) plan for U.S. fusion community participation in ITER, evaluates the plan's elements, and recommends appropriate goals, procedures, and metrics for consideration in the future development of the plan.

Early Childhood Assessment: Why, What, And How

by National Research Council of the National Academies

The assessment of young children’s development and learning has recently taken on new importance. Private and government organizations are developing programs to enhance the school readiness of all young children,especially children from economically disadvantaged homes and communities and children with special needs. Well-planned and effective assessment can inform teaching and program improvement,and contribute to better outcomes for children. This book affirms that assessments can make crucial contributions to the improvement of children’s well-being,but only if they are well designed,implemented effectively,developed in the context of systematic planning,and are interpreted and used appropriately. Otherwise,assessment of children and programs can have negative consequences for both. The value of assessments therefore requires fundamental attention to their purpose and the design of the larger systems in which they are used. Early Childhood Assessment addresses these issues by identifying the important outcomes for children from birth to age 5 and the quality and purposes of different techniques and instruments for developmental assessments.

Environmental Health Sciences Decision Making: Risk Management, Evidence, and Ethics

by Institute of Medicine

Environmental health decision making can be a complex undertaking, as there is the need to navigate and find balance among three core elements: science, policy, and the needs of the American public. Policy makers often grapple with how to make appropriate decisions when the research is uncertain. The challenge for the policy maker is to make the right decision with the best available data in a transparent process. The Environmental Health Sciences Decision Making workshop, the first in a series, was convened to inform the Roundtable on Environmental Health Sciences, Research, and Medicine on emerging issues in risk management, "weight of evidence," and ethics that influence environmental health decision making. The workshop, summarized in this volume, included an overview of the principles underlying decision making, the role of evidence and challenges for vulnerable populations, and ethical issues of conflict of interest, scientific integrity, and transparency. The workshop engaged science interest groups, industry, government, and the academic sector.

An Assessment Of The Sbir Program At The National Aeronautics And Space Administration

by National Research Council of the National Academies

The Small Business Innovation Research (SBIR) program is one of the largest examples of U.S. public-private partnerships. Founded in 1982, SBIR was designed to encourage small business to develop new processes and products and to provide quality research in support of the many missions of the U.S. government, including health, energy, the environment, and national defense. In response to a request from the U.S. Congress, the National Research Council assessed SBIR as administered by the five federal agencies that together make up 96 percent of program expenditures. This book, one of six in the series, reports on the SBIR program at the National Aeronautics and Space Administration, and finds that the program is making significant progress in achieving the Congressional goals for the program. Keeping in mind NASA's unique mission and the recent significant changes to the program, the committee found the SBIR program to be sound in concept and effective in practice at NASA.. The book recommends programmatic changes that should make the SBIR program even more effective in achieving its legislative goals.

Evaluation of the Multifunction Phased Array Radar Planning Process

by National Research Council of the National Academies

The Multifunction Phased Array Radar (MPAR) is one potentially cost-effective solution to meet the surveillance needs and of several agencies currently using decades-old radar networks. These agencies including the National Oceanic and Atmospheric Administration s (NOAA) National Weather Service (NWS), the Federal Aviation Administration (FAA), the Department of Defense (DOD) and the Department of Homeland Security (DHS) have many and varied requirements and possible applications of modern radar technology. This book analyzes what is lacking in the current system, the relevant capabilities of phased array technology, technical challenges, cost issues, and compares possible alternatives. Both specific and overarching recommendations are outlined.

Disrupting Improvised Explosive Device Terror Campaigns: Basic Research Opportunities: A WORKSHOP REPORT

by National Research Council of the National Academies

Countering the threat of improvised explosive devices (IED)s is a challenging, multilayered problem. The IED itself is just the most publicly visible part of an underlying campaign of violence, the IED threat chain. Improving the technical ability to detect the device is a primary objective, but understanding of the goals of the adversary; its sources of materiel, personnel, and money; the sociopolitical environment in which it operates; and other factors, such as the cultural mores that it must observe or override for support, may also be critical for impeding or halting the effective use of IEDs. Disrupting Improvised Explosive Device Terror Campaigns focuses on the human dimension of terror campaigns and also on improving the ability to predict these activities using collected and interpreted data from a variety of sources. A follow-up to the 2007 book, Countering the Threat of Improvised Explosive Devices: Basic Research Opportunities, this book summarizes two workshops held in 2008.

GLOBAL CLIMATE CHANGE AND EXTREME WEATHER EVENTS: Understanding the Contributions to Infectious Disease Emergence

by Institute of Medicine of the National Academies

Long before the "germ theory" of disease was described, late in the nineteenth century, humans knew that climatic conditions influence the appearance and spread of epidemic diseases. Ancient notions about the effects of weather and climate on disease remain embedded in our collective consciousness-through expressions such as "cold" for rhinovirus infections; "malaria," derived from the Latin for "bad air;" and the common complaint of feeling "under the weather." Today, evidence is mounting that earth's climate is changing at a faster rate than previously appreciated, leading researchers to view the longstanding relationships between climate and disease with new urgency and from a global perspective. On December 4 and 5, 2007, the Forum on Microbial Threats hosted a public workshop in Washington, DC to consider the possible infectious disease impacts of global climate change and extreme weather events on human, animal, and plant health, as well as their expected implications for global and national security.

Review Of The 21st Century Truck Partnership

by National Research Council of the National Academies

The 21st Century Truck Partnership (21CTP), a cooperative research and development partnership formed by four federal agencies with 15 industrial partners, was launched in the year 2000 with high hopes that it would dramatically advance the technologies used in trucks and buses, yielding a cleaner, safer, more efficient generation of vehicles. Review of the 21st Century Truck Partnership critically examines and comments on the overall adequacy and balance of the 21CTP. The book reviews how well the program has accomplished its goals, evaluates progress in the program, and makes recommendations to improve the likelihood of the Partnership meeting its goals. Key recommendations of the book include that the 21CTP should be continued, but the future program should be revised and better balanced. A clearer goal setting strategy should be developed, and the goals should be clearly stated in measurable engineering terms and reviewed periodically so as to be based on the available funds.

Initial Guidance for an Update of the National Vaccine Plan: A Letter Report to the National Vaccine Program Office

by Institute of Medicine of the National Academies

This book is the Institute of Medicine's response to the first part of the statement of task asking for a review of the 1994 National Vaccine Plan. The Committee on the Review of Priorities in the National Vaccine Plan reviewed the goals, objectives, strategies, and anticipated outcomes presented in the plan; their findings are contained in this book. In the first section of the book, the committee examines what has changed in the broader social, policy, and economic context of vaccine development and immunization, and highlights several areas where noteworthy progress has been made, particularly by federal agencies. The committee acknowledges that progress in developing and delivering vaccines has benefited from essential contributions by other stakeholders, including researchers, manufacturers, state and local public health agencies, and health care providers. In the second section of the book, the committee uses what it learned from reviewing the 1994 plan and the process of preparing it to distill key elements. Based on these elements, the committee offers guidance to NVPO and its partners on developing the update to the national vaccine plan.

Information and Communication Technology and Peacebuilding: Summary of a Workshop: July 2008

by National Academy of Engineering of the National Academies

Those who would use information and communication technology (ICT) in the cause of peace need to be cognizant of the risks as well as the benefits. ICT can facilitate positive dialogue but also hate speech. It can be used to fight corruption but also facilitate it. Simply giving people more information does not necessarily lead to predictable or positive results. As people become more informed, they may become more motivated to change their circumstances and to do so violently. On December 14, 2007, the National Academy of Engineering (NAE) convened a group of experts in diverse fields to consider the role of ICT in promoting peace and conflict resolution. The one-day workshop was designed to consider current and emerging technologies and strategies for employing them in conflict management and diplomacy. It also aimed to explore how organizations with a role in promoting peace, like the U.S. Institute of Peace, can most effectively leverage technology in carrying out their missions. Information and Communication Technology and Peacebuilding: Summary of a Workshop reviews the group’s discussions on number of key issues, illuminates certain practitioner needs, and suggests possible next steps.

Ensuring the Climate Record from the NPOESS and GOES-R Spacecraft: Elements of a Strategy to Recover Measurement Capabilities Lost in Program Restructuring

by National Research Council of the National Academies

In 2000, the nation's next-generation National Polar-orbiting Operational Environmental Satellite System (NPOESS) program anticipated purchasing six satellites for $6.5 billion, with a first launch in 2008. By November 2005, however, it became apparent that NPOESS would overrun its cost estimates by at least 25 percent. In June 2006, the planned acquisition of six spacecraft was reduced to four, the launch of the first spacecraft was delayed until 2013, and several sensors were canceled or descoped in capability. Based on information gathered at a June 2007 workshop, "Options to Ensure the Climate Record from the NPOESS and GOES-R Spacecraft," this book prioritizes capabilities, especially those related to climate research, that were lost or placed at risk following the 2006 changes. This book presents and recommends a prioritized, short-term strategy for recovery of crucial climate capabilities lost in the NPOESS and GOES-R program descopes. However, mitigation of these recent losses is only the first step in establishing a viable long-term climate strategy-one that builds on the lessons learned from the well-intentioned but poorly executed merger of the nation's weather and climate observation systems.

Value in Health Care: Accounting for Cost, Quality, Safety, Outcomes, and Innovation

by Institute of Medicine of the National Academies

The United States has the highest per capita spending on health care of any industrialized nation. Yet despite the unprecedented levels of spending, harmful medical errors abound, uncoordinated care continues to frustrate patients and providers, and U.S. healthcare costs continue to increase. The growing ranks of the uninsured, an aging population with a higher prevalence of chronic diseases, and many patients with multiple conditions together constitute more complicating factors in the trend to higher costs of care. A variety of strategies are beginning to be employed throughout the health system to address the central issue of value, with the goal of improving the net ratio of benefits obtained per dollar spent on health care. However, despite the obvious need, no single agreed-upon measure of value or comprehensive, coordinated systemwide approach to assess and improve the value of health care exists. Without this definition and approach, the path to achieving greater value will be characterized by encumbrance rather than progress. To address the issues central to defining, measuring, and improving value in health care, the Institute of Medicine convened a workshop to assemble prominent authorities on healthcare value and leaders of the patient, payer, provider, employer, manufacturer, government, health policy, economics, technology assessment, informatics, health services research, and health professions communities. The workshop, summarized in this volume, facilitated a discussion of stakeholder perspectives on measuring and improving value in health care, identifying the key barriers and outlining the opportunities for next steps.

Depression in Parents, Parenting, and Children: Opportunities to Improve Identification, Treatment, and Prevention

by Institute of Medicine

Depression is a widespread condition affecting approximately 7.5 million parents in the U.S. each year and may be putting at least 15 million children at risk for adverse health outcomes. Based on evidentiary studies, major depression in either parent can interfere with parenting quality and increase the risk of children developing mental, behavioral and social problems. Depression in Parents, Parenting, and Children highlights disparities in the prevalence, identification, treatment, and prevention of parental depression among different sociodemographic populations. It also outlines strategies for effective intervention and identifies the need for a more interdisciplinary approach that takes biological, psychological, behavioral, interpersonal, and social contexts into consideration. A major challenge to the effective management of parental depression is developing a treatment and prevention strategy that can be introduced within a two-generation framework, conducive for parents and their children. Thus far, both the federal and state response to the problem has been fragmented, poorly funded, and lacking proper oversight. This study examines options for widespread implementation of best practices as well as strategies that can be effective in diverse service settings for diverse populations of children and their families. The delivery of adequate screening and successful detection and treatment of a depressive illness and prevention of its effects on parenting and the health of children is a formidable challenge to modern health care systems. This study offers seven solid recommendations designed to increase awareness about and remove barriers to care for both the depressed adult and prevention of effects in the child. The report will be of particular interest to federal health officers, mental and behavioral health providers in diverse parts of health care delivery systems, health policy staff, state legislators, and the general public.

Changes in the Sheep Industry IN THE UNITED STATES: MAKING THE TRANSITION FROM TRADITION

by National Research Council of the National Academies

The U.S. sheep industry is complex, multifaceted, and rooted in history and tradition. The dominant feature of sheep production in the United States, and, thus, the focus of much producer and policy concern, has been the steady decline in sheep and lamb inventories since the mid-1940s. Although often described as “an industry in decline,” this report concludes that a better description of the current U.S. sheep industry is “an industry in transition.”

Using the American Community Survey for the National Science Foundation's Science and Engineering Workforce Statistics Programs

by National Research Council of the National Academies

The National Science Foundation (NSF) has long collected information on the number and characteristics of individuals with education or employment in science and engineering and related fields in the United States. An important motivation for this effort is to fulfill a congressional mandate to monitor the status of women and minorities in the science and engineering workforce. Consequently, many statistics are calculated by race or ethnicity, gender, and disability status. For more than 25 years, NSF obtained a sample frame for identifying the target population for information it gathered from the list of respondents to the decennial census long-form who indicated that they had earned a bachelors or higher degree. The probability that an individual was sampled from this list was dependent on both demographic and employment characteristics. But, the source for the sample frame will no longer be available because the census long-form is being replaced as of the 2010 census with the continuous collection of detailed demographic and other information in the new American Community Survey (ACS). At the request of NSF’s Science Resources Statistics Division, the Committee on National Statistics of the National Research Council formed a panel to conduct a workshop and study the issues involved in replacing the decennial census long-form sample with a sample from the ACS to serve as the frame for the information the NSF gathers. The workshop had the specific objective of identifying issues for the collection of field of degree information on the ACS with regard to goals, content, statistical methodology, data quality, and data products.

Implementing COLORECTAL CANCER Screening: WORKSHOP SUMMARY

by Institute of Medicine of the National Academies

The IOM's National Cancer Policy Board estimated in 2003 that even modest efforts to implement known tactics for cancer prevention and early detection could result in up to a 29 percent drop in cancer deaths in about 20 years. The IOM's National Cancer Policy Forum, which succeeded the Board after it was disbanded in 2005, continued the Board's work to outline ways to increase screening in the U.S. On February 25 and 26, 2008, the Forum convened a workshop to discuss screening for colorectal cancer. Colorectal cancer screening remains low, despite strong evidence that screening prevents deaths. With the aim to make recommended colorectal cancer screening more widespread, the workshop discussed steps to be taken at the clinic, community, and health system levels. Workshop speakers, representing a broad spectrum of leaders in the field, identified major barriers to increased screening and described strategies to overcome these obstacles. This workshop summary highlights the information presented, as well as the subsequent discussion about actions needed to increase colorectal screening and, ultimately, to prevent more colorectal cancer deaths.

Assessing Accomplished Teaching: Advanced-Level Certification Programs

by National Research Council of the National Academies

The mission of the National Board for Professional Teaching Standards (NBPTS) is to establish “high and rigorous standards for what teachers should know and be able to do, to certify teachers who meet those standards, and to advance other education reforms for the purpose of improving student learning in American schools.” In response to a request from the U.S. Congress, the National Research Council developed a framework for evaluating programs that award advanced-level teacher certification and applied that framework in an evaluation of the impacts of the NBPTS. Specifically, this book addresses the impacts on students, teachers, and the educational system in this country. Assessing Accomplished Teaching finds that teachers who earn board certification are more effective at improving their students’ achievement than other teachers, but school systems vary greatly in the extent to which they recognize and make use of board-certified teachers. Many of the questions on the evaluation framework could not be answered because the data have not been collected, and the report makes recommendations for the kinds of research that are needed to fully evaluate the impacts of board certification by the NBPTS.

Hydrologic Effects of a Changing Forest Landscape

by National Research Council of the National Academies

Of all the outputs of forests, water may be the most important. Streamflow from forests provides two-thirds of the nation's clean water supply. Removing forest cover accelerates the rate that precipitation becomes streamflow; therefore, in some areas, cutting trees causes a temporary increase in the volume of water flowing downstream. This effect has spurred political pressure to cut trees to increase water supply, especially in western states where population is rising. However, cutting trees for water gains is not sustainable: increases in flow rate and volume are typically short-lived, and the practice can ultimately degrade water quality and increase vulnerability to flooding. Forest hydrology, the study of how water flows through forests, can help illuminate the connections between forests and water, but it must advance if it is to deal with today's complexities, including climate change, wildfires, and changing patterns of development and ownership. This book identifies actions that scientists, forest and water managers, and citizens can take to help sustain water resources from forests.

Transitions to Alternative Transportation Technologies -- A Focus on Hydrogen

by National Research Council of the National Academies

Hydrogen fuel cell vehicles (HFCVs) could alleviate the nation's dependence on oil and reduce U.S. emissions of carbon dioxide, the major greenhouse gas. Industry-and government-sponsored research programs have made very impressive technical progress over the past several years, and several companies are currently introducing pre-commercial vehicles and hydrogen fueling stations in limited markets. However, to achieve wide hydrogen vehicle penetration, further technological advances are required for commercial viability, and vehicle manufacturer and hydrogen supplier activities must be coordinated. In particular, costs must be reduced, new automotive manufacturing technologies commercialized, and adequate supplies of hydrogen produced and made available to motorists. These efforts will require considerable resources, especially federal and private sector funding. This book estimates the resources that will be needed to bring HFCVs to the point of competitive self-sustainability in the marketplace. It also estimates the impact on oil consumption and carbon dioxide emissions as HFCVs become a large fraction of the light-duty vehicle fleet.

BREAKTHROUGH BUSINESS MODELS: Drug Development for Rare and Neglected Diseases and Individualized Therapies

by Institute of Medicine of the National Academies

The process for developing new drug and biologic products is extraordinarily expensive and time-consuming. Although large pharmaceutical companies may be able to afford the cost of development because they can expect a large return on investment, organizations developing drugs to treat rare and neglected diseases are unable to rely on such returns. On June 23, 2008, the Institute of Medicine's Forum on Drug Discovery, Development, and Translation held a public workshop, "Breakthrough Business Models: Drug Development for Rare and Neglected Diseases and Individualized Therapies," which sought to explore new and innovative strategies for developing drugs for rare and neglected diseases.

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