Tag Archives: protecting data

Sharing Clinical Trial Data to Advance Scientific Discovery and Improve Care

Clinical trials generate vast amounts of data, yet a large portion of this information is never published or made available to other researchers. Data sharing could advance scientific discovery and improve clinical care, but it involves potential risks and costs for key stakeholders, including clinical trialists, sponsors, researchers, and patients. Our publications discuss the challenges and opportunities for stakeholders to better harmonize incentives, policy, data standards, and governance to encourage the sharing and reuse of clinical trial data sharing.

Sharing Clinical Trial Data: Maximizing Benefits, Minimizing Risk

Data sharing can accelerate new discoveries by avoiding duplicative trials, stimulating new ideas for research, and enabling the maximal scientific knowledge and benefits to be gained from the efforts of clinical trial participants and …

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The Prevention and Treatment of Missing Data in Clinical Trials

Randomized clinical trials are the primary tool for evaluating new medical interventions. Randomization provides for a fair comparison between treatment and control groups, balancing out, on average, distributions of known and unknown factors …

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Sharing Clinical Research Data: Workshop Summary

Pharmaceutical companies, academic researchers, and government agencies such as the Food and Drug Administration and the National Institutes of Health all possess large quantities of clinical research data. If these data were shared more widely …

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Biomarker Tests for Molecularly Targeted Therapies: Key to Unlocking Precision Medicine

Every patient is unique, and the evolving field of precision medicine aims to ensure the delivery of the right treatment to the right patient at the right time. In an era of rapid advances in biomedicine and enhanced understanding of the genetic …

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Discussion Framework for Clinical Trial Data Sharing: Guiding Principles, Elements, and Activities

Sharing data generated through the conduct of clinical trials offers the promise of placing evidence about the safety and efficacy of therapies and clinical interventions on a firmer basis and enhancing the benefits of clinical trials. …

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A National Cancer Clinical Trials System for the 21st Century: Reinvigorating the NCI Cooperative Group Program

The National Cancer Institute’s (NCI) Clinical Trials Cooperative Group Program has played a key role in developing new and improved cancer therapies. However, the program is falling short of its potential, and the IOM recommends changes that aim …

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Ovarian Cancers: Evolving Paradigms in Research and Care

In an era of promising advances in cancer research, there are considerable and even alarming gaps in the fundamental knowledge and understanding of ovarian cancer. Researchers now know that ovarian cancer is not a single disease–several distinct …

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Free PDF Downloads, Audio, Video and More for January 2011

As we begin a new year, the National Academies Press offers you the following selection of books, videos, and podcasts free of charge. Start collecting free resources for your personal STEM (Science, Technology, Engineering and Mathematics) library today.

	Implementing the New Biology: Decadal Challenges Linking Food, Energy, and the Environment: Summary of a Workshop, June 3-4, 2010 As the second decade of the 21st century begins, the challenge of how to feed a growing world population and provide sustainable, affordable energy to fulfill daily needs, while also improving human health and protecting the environment, is clear and urgent…
	The Science of Adolescent Risk-Taking: Workshop Report (Prepublication Available) Adolescence is a time when youth make decisions, both good and bad, that have consequences for the rest of their lives. Some of these decisions put them at risk of lifelong health problems, injury, or death. The Institute of Medicine held three public workshops between 2008…
	Challenges and Opportunities for Education About Dual Use Issues in the Life Sciences The Challenges and Opportunities for Education About Dual Use Issues in the Life Sciences workshop was held to engage the life sciences community on the particular security issues related to research with dual use potential. More than 60 participants from…
	Report of the Panel on Implementing Recommendations from the New Worlds, New Horizons Decadal Survey (Prepublication Available) The 2010 Astronomy and Astrophysics Decadal Survey report, New Worlds, New Horizons in Astronomy and Astrophysics (NWNH), outlines a scientifically exciting and programmatically integrated plan for both ground- and space-based astronomy and astrophysics in…
	Direct-to-Consumer Genetic Testing: Summary of a Workshop Today, scores of companies, primarily in the United States and Europe, are offering whole genome scanning services directly to the public. The proliferation of these companies and the services they offer demonstrate a public appetite for this information and…
	Avoiding Technology Surprise for Tomorrow’s Warfighter–Symposium 2010 The Symposium on Avoiding Technology Surprise for Tomorrow’s Warfighter is a forum for consumers and producers of scientific and technical intelligence to exchange perspectives on the potential sources of emerging or disruptive technologies and behaviors…
	Evaluation of U.S. Air Force Preacquisition Technology Development (Prepublication Available) From the days of biplanes and open cockpits, the air forces of the United States have relied on the mastery of technology. From design to operation, a project can stretch to 20 years and more, with continuous increases in cost. Much of the delay and cost…
	The Prevention and Treatment of Missing Data in Clinical Trials Randomized clinical trials are the primary tool for evaluating new medical interventions. Randomization provides for a fair comparison between treatment and control groups, balancing out, on average, distributions of known and unknown factors among the…
	Sex Differences and Implications for Translational Neuroscience Research: Workshop Summary (Prepublication Available) Biological differences between the sexes influence not only individual health but also public health, biomedical research, and health care. The Institute of Medicine held a workshop March 8-9, 2010, to discuss sex differences and their implications for…
	State Assessment Systems: Exploring Best Practices and Innovations: Summary of Two Workshops Educators and policy makers in the United States have relied on tests to measure educational progress for more than 150 years, and have used the results for many purposes. They have tried minimum competency testing; portfolios; multiple-choice items, brief…
	Preparing for the Future of HIV/AIDS in Africa: A Shared Responsibility (Prepublication Available) HIV/AIDS is a catastrophe globally but nowhere more so than in sub-Saharan Africa, which in 2008 accounted for 67 percent of cases worldwide and 91 percent of new infections. The Institute of Medicine recommends that the United States and African nations move toward a strategy…
	Measuring the Group Quarters Population in the American Community Survey: Interim Report Following several years of testing and evaluation, the American Community Survey (ACS) was launched in 2005 as a replacement for the census “long form,” used to collect detailed social, economic, and housing data from a sample of the U.S. population as part…

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	Lights at Night Explore images of Earth at night and compare images from 1993, 1997 and 2003 to infer changes in population, energy consumption, energy efficiency and economic activity.

	Landscapes on the Edge: New Horizons for Research on Earth’s Surface Chemical, physical, biotic, and human processes constantly reshape Earth’s surface from particles to continents, over timescales from nanoseconds to millions of years. In this video, Dr. Dorothy Merritts describes the research agenda laid out in this recent National Research Council book.

	Adolescent Health Services: Missing Opportunities Adolescence is a time when youth establish health habits, both good and bad, that often last a lifetime, yet the U.S. health care system today is not designed to help young people develop healthy routines, behaviors, and relationships to prepare them for adulthood. Learn more in this video.

	The Bone Detective Diane France loves bones. Why? Because they talk to her. Every skeleton she meets whispers secrets about the life and death of its owner. Diane France can hear those secrets because she’s a forensic anthropologist, a bone detective. Watch this video to learn about the work of this world-renowned bone detective.

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Listen to Sounds of Science podcasts on topics ranging from energy to metagenomics free-of-charge today.

Featured Podcasts:

Weight Gain During Pregnancy: How Much Is Too Much?

Progress in Preventing Childhood Obesity: How Do We Measure Up?

School Meals: Building Blocks for Healthy Children

The podcasts above are based on books published by the National Academies Press. To receive a 20% discount on the print version of these titles, visit our Special Offers page.

MORE FREE RESOURCES

	Understanding Biosecurity: Protecting Against the Misuse of Science in Today’s World Drawing on the work of the National Academies, this booklet introduces some of the issues at the intersection of science and security. The life sciences offer tremendous promise for meeting many 21st century challenges. Read more

	What You Need To Know About Infectious Disease This publication from the Institute of Medicine examines the relationship between humans and microbes. The booklet discusses how infection works, identifies disease threats, and explores global challenges. Learn more

Engineer Your Life
This web site, designed for high school girls, promotes engineering as a career choice. It features tips on preparing for an engineering career and includes profiles of women engineers, as well as resources for teachers and counselors.

Evolution Resources
The Evolution Resources web site explains the methods of science, documents the overwhelming evidence in support of biological evolution, and evaluates the alternative perspectives offered by advocates of various kinds of creationism, including “intelligent design.” The site includes reports, publications, and resources for teaching evolution.

New Publications This Week (10/19-10/23)

Some weeks are bigger than others, and this week is one of those big weeks. Two of our publications got a lot of attention—School Meals and Hidden Costs of Energy—so we thought we’d feature both of them.

There are plenty more, though: two publications on childhood obesity, as well as publications covering tobacco use in the military, the Department of Defense’s Fast Track of SBIR, NASA, and state voter registration.

If you’d like faster notification of our new publications, subscribe to the New From NAP RSS feed, or connect with us on Twitter or Facebook for featured books and articles.

Featured Publications

School Meals: Building Blocks for Healthy Children (prepublication)

Ensuring that the foods provided to children in schools are consistent with current dietary recommendations is an important national focus. Various laws and regulations govern the operation of school meal programs. In 1995, Nutrition Standards and Meal Requirements were put in place to ensure that all meals offered would be high in nutritional quality.

School Meals: Building Blocks For Healthy Children reviews and provides recommendations to update the nutrition standard and the meal requirements for the National School Lunch Program and School Breakfast Program. The recommendations reflect new developments in nutrition science, increase the availability of key food groups in the school meal programs, and allow these programs to better meet the nutritional needs of children, foster healthy eating habits, and safeguard children’s health.

School Meals sets standards for menu planning that focus on food groups, calories, saturated fat, and sodium and that incorporate Dietary Guidelines for Americans and the Dietary Reference Intakes. This book will be used as a guide for school food authorities, food producers, policy leaders, state/local government and parents.

Hidden Costs of Energy: Unpriced Consequences of Energy Production and Use (prepublication)

Despite the many benefits of energy, most of which are reflected in energy market prices, the production, distribution, and use of energy causes negative effects. Many of these negative effects are not reflected in energy market prices. When market failures like this occur, there may be a case for government interventions in the form of regulations, taxes, fees, tradable permits or other instruments that will motivate recognition of these external or hidden costs.

Hidden Costs of Energy defines and evaluates key external costs and benefits that are associated with the production, distribution, and use of energy, but not reflected in market prices. In aggregate, the damage estimates presented here are substantial, and reflect damages from air pollution associated with electricity generation, motor vehicle transportation, and heat generation. The book also considers other effects not quantified in dollar amounts, such as damages from climate change, effects of some air pollutants such as mercury, and risks to national security.

While not a comprehensive guide to policy, this analysis indicates that major initiatives to further reduce other emissions, improve energy efficiency, or shift to a cleaner electricity-generating mix could substantially reduce the damages of external effects. A first step in minimizing the adverse consequences of new energy technologies is to better understand these external effects and damages. Hidden Costs of Energy will therefore be a vital informational tool for government policy makers, scientists, and economists in even the earliest stages of research and development on energy technologies.

All Publications This Week

Protecting and Accessing Data from the Survey of Earned Doctorates: A Workshop Summary (prepublication)

Improving State Voter Registration Databases Final Report (prepublication)

Childhood Obesity Prevention in Texas: Workshop Summary (prepublication)

Community Perspectives on Obesity Prevention in Children: Workshop Summary (prepublication)

Revisiting the Department of Defense SBIR Fast Track Initiative (final)

Combating Tobacco Use in Military and Veteran Populations (final)

Fostering Visions for the Future: A Review of the NASA Institute for Advanced Concepts (final)