@BOOK{NAP author = "National Academies of Sciences, Engineering, and Medicine", title = "A Review of the Citrus Greening Research and Development Efforts Supported by the Citrus Research and Development Foundation: Fighting a Ravaging Disease", isbn = "978-0-309-47214-2", abstract = "Huanglongbing (HLB) or citrus greening, first observed more than a hundred years ago in Asia, is the most serious disease threat to the citrus-growing industry worldwide due to its complexity, destructiveness, and incalcitrance to management. First detected in Florida in 2005, HLB is now widespread in the state and threatens the survival of the Florida citrus industry despite substantial allocation of research funds by Florida citrus growers and federal and state agencies.\n\nAs the HLB epidemic raged in 2008, Florida citrus growers began allocating funds for HLB research in hopes of finding short-, medium-, and long-term solutions. This effort created the Citrus Research and Development Foundation (CRDF), an organization with oversight responsibility for HLB research and development efforts in Florida. This report provides an independent review of the portfolio of research projects that have been or continue to be supported by the CRDF. It seeks to identify ways to retool HLB research\u2014which, despite significantly increasing understanding of the factors involved in HLB, has produced no major breakthroughs in controlling the disease\u2014and accelerate the development of durable tools and strategies that could help abate the damage caused by HLB and prevent the possible collapse of the Florida citrus industry.", url = "https://nap.nationalacademies.org/catalog/25026/a-review-of-the-citrus-greening-research-and-development-efforts-supported-by-the-citrus-research-and-development-foundation", year = 2018, publisher = "The National Academies Press", address = "Washington, DC" } @BOOK{NAP editor = "Adele Glimm", title = "Gene Hunter: The Story of Neuropsychologist Nancy Wexler", isbn = "978-0-309-09558-7", abstract = "Nancy Wexler is a hunter. Her quarry is the gene responsible for a fatal, inherited sickness called Huntington's disease. Nancy's work is a breathtaking race against time not only for others but maybe for herself, as well. Nancy Wexler is the daughter of a Huntington's patient and is at risk for this disease. Finding this gene is a vital step toward preventing or curing Huntington's and thus saving lives. Nancy's work takes her all over the world, specifically to small villages in Venezuela where the mysterious gene affects more people than anywhere else on the globe. Blood samples generously donated by the villagers hold the clues to discovering the gene. Hunter, detective, scientist: Nancy is all these, plus a friend to people everywhere who are affected by Huntington's and other diseases of the brain. Gene Hunter is the powerful story of a courageous and dedicated woman whose passion for science is both personally and intellectually satisfying. Author Adele Glimm draws on firsthand accounts from Nancy and her friends, family, and colleagues to tell us how a curious, strongminded woman became an accomplished neuropsychologist.\nThis title aligns to Common Core standards:\nInterest Level Grades 6 - 8; Reading Level Grade level Equivalent: 7.1: Lexile Measure: 1080L; DRA: Not Available; Guided Reading: Z", url = "https://nap.nationalacademies.org/catalog/11548/gene-hunter-the-story-of-neuropsychologist-nancy-wexler", year = 2006, publisher = "The National Academies Press", address = "Washington, DC" } @BOOK{NAP author = "National Academies of Sciences, Engineering, and Medicine", editor = "Ariel Markowitz-Shulman and Erin Hammers-Forstag and Siobhan Addie and Sarah H. Beachy", title = "Exploring the State of the Science in the Field of Regenerative Medicine: Challenges of and Opportunities for Cellular Therapies: Proceedings of a Workshop", isbn = "978-0-309-45508-4", abstract = "Regenerative medicine holds the potential to create living, functional cells and tissues that can be used to repair or replace those that have suffered potentially irreparable damage due to disease, age, traumatic injury, or genetic and congenital defects. The field of regenerative medicine is broad and includes research and development components of gene and cell therapies, tissue engineering, and non-biologic constructs. Although regenerative medicine has the potential to improve health and deliver economic benefits, this relatively new field faces challenges to developing policies and procedures to support the development of novel therapies are both safe and effective. \n\nIn October 2016, the National Academies of Sciences, Engineering, and Medicine hosted a public workshop with the goal of developing a broad understanding of the opportunities and challenges associated with regenerative medicine cellular therapies and related technologies. Participants explored the state of the science of cell-based regenerative therapies within the larger context of patient care and policy. This publication summarizes the presentations and discussions from the workshop.", url = "https://nap.nationalacademies.org/catalog/24671/exploring-the-state-of-the-science-in-the-field-of-regenerative-medicine", year = 2017, publisher = "The National Academies Press", address = "Washington, DC" } @BOOK{NAP author = "Institute of Medicine", editor = "Theresa Wizemann and Sally Robinson and Robert Giffin", title = "Breakthrough Business Models: Drug Development for Rare and Neglected Diseases and Individualized Therapies: Workshop Summary", isbn = "978-0-309-12088-3", abstract = "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.\nOn 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.", url = "https://nap.nationalacademies.org/catalog/12219/breakthrough-business-models-drug-development-for-rare-and-neglected-diseases", year = 2009, publisher = "The National Academies Press", address = "Washington, DC" } @BOOK{NAP author = "National Academies of Sciences, Engineering, and Medicine", editor = "Steven Moss and Michael Zierler", title = "Toward Sequencing and Mapping of RNA Modifications: Proceedings of a Workshop–in Brief", abstract = "One strategy cells use for regulation is modifying proteins, DNA, and RNA to control their structure, function, and stability. For years, research has focused on the reversible modifications to proteins and DNA. However, RNA can also be highly modified, and more than 170 types of modification to RNA have been identified so far. Current methods for mapping and sequencing RNA and its modifications - also known as the epitranscriptome - are limited, partly because available sequencing technologies can detect only a small number of them. This limits the understanding of different molecular processes and leaves a gap in knowledge related to human diseases and disorders.\nTo address these limitations and develop a roadmap for the sequencing of RNA with the epitranscriptome, the National Academies of Sciences, Engineering, and Medicine convened an ad hoc committee to provide a consensus report. A workshop held on March 14-15, 2023 was one part of an information-gathering effort by the committee and is summarized in this proceedings. ", url = "https://nap.nationalacademies.org/catalog/27149/toward-sequencing-and-mapping-of-rna-modifications-proceedings-of-a", year = 2023, publisher = "The National Academies Press", address = "Washington, DC" } @BOOK{NAP author = "Institute of Medicine", editor = "Sarah Hanson and Lori Nadig and Bruce Altevogt", title = "Venture Philanthropy Strategies to Support Translational Research: Workshop Summary", isbn = "978-0-309-11666-4", abstract = "Many voluntary health organizations fund translational research. An increasing number of these organizations are looking at venture philanthropy as a critical way to advance their missions of helping patients and working to cure disease.\nA wide range of participants gathered on October 3, 2008 at the Beckman Center of the National Academies of Science for a workshop titled \"Venture Philanthropy Strategies Used by Patient Organizations to Support Translational Research.\" Participants with experience in venture philanthropy shared their experiences and lessons learned in order to improve efficiency and effectiveness in translational research.", url = "https://nap.nationalacademies.org/catalog/12558/venture-philanthropy-strategies-to-support-translational-research-workshop-summary", year = 2009, publisher = "The National Academies Press", address = "Washington, DC" } @BOOK{NAP author = "National Academies of Sciences, Engineering, and Medicine", editor = "Ariel Markowitz-Shulman and Siobhan Addie and Meredith Hackmann and Joe Alper and Sarah H. Beachy", title = "Navigating the Manufacturing Process and Ensuring the Quality of Regenerative Medicine Therapies: Proceedings of a Workshop", isbn = "978-0-309-46647-9", abstract = "On June 26, 2017, the Forum on Regenerative Medicine hosted a public workshop in Washington, DC, titled Navigating the Manufacturing Process and Ensuring the Quality of Regenerative Medicine Therapies in order to examine and discuss the challenges, opportunities, and best practices associated with defining and measuring the quality of cell and tissue products and raw materials in the research and manufacturing of regenerative medicine therapies. The goal of the workshop was to learn from existing examples of the manufacturing of early-generation regenerative medicine products and to address how progress could be made in identifying and measuring critical quality attributes. The workshop also addressed the challenges of designing and adhering to standards as a way of helping those who are working to scale up processes and techniques from a research laboratory to the manufacturing environment. This publication summarizes the presentations and discussions from the workshop.", url = "https://nap.nationalacademies.org/catalog/24913/navigating-the-manufacturing-process-and-ensuring-the-quality-of-regenerative-medicine-therapies", year = 2017, publisher = "The National Academies Press", address = "Washington, DC" } @BOOK{NAP author = "National Academies of Sciences, Engineering, and Medicine", editor = "Morgan L. Boname and Amanda Wagner Gee and Theresa Wizemann and Siobhan Addie and Sarah H. Beachy", title = "Enabling Precision Medicine: The Role of Genetics in Clinical Drug Development: Proceedings of a Workshop", isbn = "978-0-309-46263-1", abstract = "Those involved in the drug development process face challenges of efficiency and overall sustainability due in part to high research costs, lengthy development timelines, and late-stage drug failures. Novel clinical trial designs that enroll participants based on their genetics represent a potentially disruptive change that could improve patient outcomes, reduce costs associated with drug development, and further realize the goals of precision medicine. \n\nOn March 8, 2017, the Forum on Drug Discovery, Development, and Translation and the Roundtable on Genomics and Precision Health of the National Academies of Sciences, Engineering, and Medicine hosted the workshop Enabling Precision Medicine: The Role of Genetics in Clinical Drug Development. Participants examined successes, challenges, and possible best practices for effectively using genetic information in the design and implementation of clinical trials to support the development of precision medicines, including exploring the potential advantages and disadvantages of such trials across a variety of disease areas. This publication summarizes the presentations and discussions from the workshop.", url = "https://nap.nationalacademies.org/catalog/24829/enabling-precision-medicine-the-role-of-genetics-in-clinical-drug", year = 2017, publisher = "The National Academies Press", address = "Washington, DC" } @BOOK{NAP author = "National Academies of Sciences, Engineering, and Medicine", title = "Standing Committee on Emerging Infectious Diseases and 21st Century Health Threats: Annual Report 2020", abstract = "Since March 2020, the standing committee has consistently generated real-time policy recommendations and paved the way for the National Academies to produce an unprecedented amount of timely, evidence-based guidance in response to the COVID-19 pandemic. This Annual Report summarizes the committee\u2019s work in 2020 and highlights the short consensus study reports, rapid expert consultations, meetings, and affiliated activities conducted during the year.", url = "https://nap.nationalacademies.org/catalog/26715/standing-committee-on-emerging-infectious-diseases-and-21st-century-health-threats", year = 2022, publisher = "The National Academies Press", address = "Washington, DC" } @BOOK{NAP author = "Transportation Research Board and National Academies of Sciences, Engineering, and Medicine", title = "Older Commercial Drivers: Do They Pose a Safety Risk?", abstract = "TRB\u2019s Commercial Truck and Bus Safety Synthesis Program (CTBSSP) Synthesis 18: Older Commercial Drivers: Do They Pose a Safety Risk? explores age-related changes in the basic functional abilities needed to drive safely. The report is designed to help assist industry and labor practitioners in promoting safer commercial operations.", url = "https://nap.nationalacademies.org/catalog/14420/older-commercial-drivers-do-they-pose-a-safety-risk", year = 2010, publisher = "The National Academies Press", address = "Washington, DC" } @BOOK{NAP author = "Institute of Medicine", editor = "Matthew Hougan and Bruce Altevogt", title = "From Molecules to Minds: Challenges for the 21st Century: Workshop Summary", isbn = "978-0-309-12092-0", abstract = "Neuroscience has made phenomenal advances over the past 50 years and the pace of discovery continues to accelerate. On June 25, 2008, the Institute of Medicine (IOM) Forum on Neuroscience and Nervous System Disorders hosted more than 70 of the leading neuroscientists in the world, for a workshop titled \"From Molecules to Minds: Challenges for the 21st Century.\" The objective of the workshop was to explore a set of common goals or \"Grand Challenges\" posed by participants that could inspire and rally both the scientific community and the public to consider the possibilities for neuroscience in the 21st century. \nThe progress of the past in combination with new tools and techniques, such as neuroimaging and molecular biology, has positioned neuroscience on the cusp of even greater transformational progress in our understanding of the brain and how its inner workings result in mental activity.\nThis workshop summary highlights the important issues and challenges facing the field of neuroscience as presented to those in attendance at the workshop, as well as the subsequent discussion that resulted.\nAs a result, three overarching Grand Challenges emerged:\n\n How does the brain work and produce mental activity? How does physical activity in the brain give rise to thought, emotion, and behavior?\n How does the interplay of biology and experience shape our brains and make us who we are today?\n How do we keep our brains healthy? How do we protect, restore, or enhance the functioning of our brains as we age?\n", url = "https://nap.nationalacademies.org/catalog/12220/from-molecules-to-minds-challenges-for-the-21st-century-workshop", year = 2008, publisher = "The National Academies Press", address = "Washington, DC" } @BOOK{NAP author = "National Research Council", editor = "Stephen A. Merrill and Anne-Marie Mazza", title = "Reaping the Benefits of Genomic and Proteomic Research: Intellectual Property Rights, Innovation, and Public Health", isbn = "978-0-309-10067-0", abstract = "The patenting and licensing of human genetic material and proteins represents an extension of intellectual property (IP) rights to naturally occurring biological material and scientific information, much of it well upstream of drugs and other disease therapies. This report concludes that IP restrictions rarely impose significant burdens on biomedical research, but there are reasons to be apprehensive about their future impact on scientific advances in this area. The report recommends 13 actions that policy-makers, courts, universities, and health and patent officials should take to prevent the increasingly complex web of IP protections from getting in the way of potential breakthroughs in genomic and proteomic research. It endorses the National Institutes of Health guidelines for technology licensing, data sharing, and research material exchanges and says that oversight of compliance should be strengthened. It recommends enactment of a statutory exception from infringement liability for research on a patented invention and raising the bar somewhat to qualify for a patent on upstream research discoveries in biotechnology. With respect to genetic diagnostic tests to detect patient mutations associated with certain diseases, the report urges patent holders to allow others to perform the tests for purposes of verifying the results.", url = "https://nap.nationalacademies.org/catalog/11487/reaping-the-benefits-of-genomic-and-proteomic-research-intellectual-property", year = 2006, publisher = "The National Academies Press", address = "Washington, DC" } @BOOK{NAP author = "Institute of Medicine", editor = "Robert Giffin and Sally Robinson", title = "Addressing the Threat of Drug-Resistant Tuberculosis: A Realistic Assessment of the Challenge: Workshop Summary", isbn = "978-0-309-13044-8", abstract = "Tuberculosis is one of the leading causes of death in the world today, with 4,500 people dying from the disease every day. Many cases of TB can be cured by available antibiotics, but some TB is resistant to multiple drugs--a major and growing threat worldwide. The Institute of Medicine's Forum on Drug Discovery, Development, and Translation hosted a workshop on November 5, 2008, to address the mounting concern of drug-resistant TB. The session brought together a wide range of international experts to discuss what is known and not known about this growing threat, and to explore possible solutions.", url = "https://nap.nationalacademies.org/catalog/12570/addressing-the-threat-of-drug-resistant-tuberculosis-a-realistic-assessment", year = 2009, publisher = "The National Academies Press", address = "Washington, DC" } @BOOK{NAP author = "Institute of Medicine", title = "Research and Service Programs in the PHS: Challenges in Organization", isbn = "978-0-309-04581-0", abstract = "This volume looks at the administration of research and service programs in the U.S. Public Health Service to determine whether these programs fare better when administered jointly or through separate agencies. It uses case studies and analyses of programs and administrative processes, together with the results of more than a hundred interviews with top-ranking government officials and representatives of concerned organizations.\nThe book also focuses on the extent and effects of program and project duplication, replication, and complementarity in the research activities of the National Institutes of Health and the Alcohol, Drug Abuse, and Mental Health Administration.", url = "https://nap.nationalacademies.org/catalog/1871/research-and-service-programs-in-the-phs-challenges-in-organization", year = 1991, publisher = "The National Academies Press", address = "Washington, DC" } @BOOK{NAP author = "Institute of Medicine", title = "Scientific Opportunities and Public Needs: Improving Priority Setting and Public Input at the National Institutes of Health", isbn = "978-0-309-06130-8", abstract = "The National Institutes of Health (NIH) is the single largest funder of health research in the United States, and research it has supported has been pivotal to the explosion of biomedical knowledge over the past century. As NIH's success has grown, so has pressure from advocacy groups and other members of the public to devote more spending to their health concerns. In response to a request from Congress, this IOM study reviewed NIH's research priority-setting process and made recommendations for possible improvement. The committee considered the: \nFactors and criteria used by NIH to make funding allocations.\n\n Process by which the funding decisions are made.\n Mechanisms for public input.\n Impact of congressional statutory directives on funding decisions.\n\nAmong other recommendations, the book recommends that NIH seek broader public input on decisions about how to spend its nearly $14 billion budget; it also urged the agency to create new Offices of Public Liaison in the Office of the Director and in each of the 21 research institutes to allow interested people to formally take part in the process.", url = "https://nap.nationalacademies.org/catalog/6225/scientific-opportunities-and-public-needs-improving-priority-setting-and-public", year = 1998, publisher = "The National Academies Press", address = "Washington, DC" } @BOOK{NAP author = "Institute of Medicine and National Academies of Sciences, Engineering, and Medicine", editor = "Sharyl J. Nass and Margie Patlak", title = "Comprehensive Cancer Care for Children and Their Families: Summary of a Joint Workshop by the Institute of Medicine and the American Cancer Society", isbn = "978-0-309-37441-5", abstract = "Childhood cancer is an area of oncology that has seen both remarkable progress as well as substantial continuing challenges. While survival rates for some pediatric cancers present a story of success, for many types of pediatric cancers, little progress has been made. Many cancer treatments are known to cause not only significant acute side effects, but also lead to numerous long-term health risks and reduced quality of life. Even in cases where the cancer is considered curable, the consequences of treatment present substantial long-term health and psychosocial concerns for children, their families, their communities, and our health system. To examine specific opportunities and suggestions for driving optimal care delivery supporting survival with high quality of life, the National Cancer Policy Forum of the Institute of Medicine and the American Cancer Society co-hosted a workshop which convened experts and members of the public on March 9 and 10, 2015. At this workshop, clinicians and researchers in pediatric oncology, palliative, and psychosocial care, along with representatives from the U.S. Food and Drug Administration, National Cancer Institute, Children's Oncology Group, pharmaceutical companies, and patient advocacy organizations, discussed and developed a menu of options for action to improve research, quality of care, and outcomes for pediatric cancer patients and their families. In addition, parents of children with cancer and pediatric cancer survivors shared their experiences with care and provided poignant personal perspectives on specific quality of life concerns and support needs for children and families across the life spectrum. This report summarizes the presentations and discussion of the workshop.\n", url = "https://nap.nationalacademies.org/catalog/21754/comprehensive-cancer-care-for-children-and-their-families-summary-of", year = 2015, publisher = "The National Academies Press", address = "Washington, DC" } @BOOK{NAP author = "Institute of Medicine", editor = "Sarah H. Beachy and Samuel G. Johnson and Steve Olson and Adam C. Berger", title = "Drug Repurposing and Repositioning: Workshop Summary", isbn = "978-0-309-30204-3", abstract = "Drug development can be time-consuming and expensive. Recent estimates suggest that, on average, it takes 10 years and at least $1 billion to bring a drug to market. Given the time and expense of developing drugs de novo, pharmaceutical companies have become increasingly interested in finding new uses for existing drugs - a process referred to as drug repurposing or repositioning.\nHistorically, drug repurposing has been largely an unintentional, serendipitous process that took place when a drug was found to have an offtarget effect or a previously unrecognized on-target effect that could be used for identifying a new indication. Perhaps the most recognizable example of such a successful repositioning effort is sildenafil. Originally developed as an anti-hypertensive, sildenafil, marketed as Viagra and under other trade names, has been repurposed for the treatment of erectile dysfunction and pulmonary arterial hypertension. Viagra generated more than $2 billion worldwide in 2012 and has recently been studied for the treatment of heart failure.\nGiven the widespread interest in drug repurposing, the Roundtable on Translating Genomic-Based Research for Health of the Institute of Medicine hosted a workshop on June 24, 2013, in Washington, DC, to assess the current landscape of drug repurposing activities in industry, academia, and government. Stakeholders, including government officials, pharmaceutical company representatives, academic researchers, regulators, funders, and patients, were invited to present their perspectives and to participate in workshop discussions. Drug Repurposing and Repositioning is the summary of that workshop. This report examines enabling tools and technology for drug repurposing; evaluates the business models and economic incentives for pursuing a repurposing approach; and discusses how genomic and genetic research could be positioned to better enable a drug repurposing paradigm.\n \n", url = "https://nap.nationalacademies.org/catalog/18731/drug-repurposing-and-repositioning-workshop-summary", year = 2014, publisher = "The National Academies Press", address = "Washington, DC" } @BOOK{NAP author = "National Academies of Sciences, Engineering, and Medicine", editor = "Lisa Bain and Sheena M. Posey Norris and Clare Stroud", title = "Transgenic Neuroscience Research: Exploring the Scientific Opportunities Afforded by New Nonhuman Primate Models: Proceedings of a Workshop", isbn = "978-0-309-48873-0", abstract = "To examine the promise, concerns, and challenges related to neuroscience research using genetically modified nonhuman primates, the National Academies of Sciences, Engineering, and Medicine hosted a public workshop on October 4, 2018, bringing together an international group of experts and stakeholders representing academia, industry, laboratory animal management, disease-focused foundations, and federal agencies. The workshop was designed to explore the current state and future promise of research using genetically modified nonhuman primate models of disease to understand the complex functions of the brain that control behavior, movement, and cognition in both health and disease states. This publication summarizes the presentations and discussions from the workshop.", url = "https://nap.nationalacademies.org/catalog/25362/transgenic-neuroscience-research-exploring-the-scientific-opportunities-afforded-by-new", year = 2019, publisher = "The National Academies Press", address = "Washington, DC" } @BOOK{NAP author = "National Academies of Sciences, Engineering, and Medicine", title = "Roundtable on Population Health Improvement: 2020 Annual Report", url = "https://nap.nationalacademies.org/catalog/27082/roundtable-on-population-health-improvement-2020-annual-report", year = 2021, publisher = "The National Academies Press", address = "Washington, DC" } @BOOK{NAP author = "Institute of Medicine and National Academies of Sciences, Engineering, and Medicine", editor = "Anne Claiborne and Rebecca English and Jeffrey Kahn", title = "Mitochondrial Replacement Techniques: Ethical, Social, and Policy Considerations", isbn = "978-0-309-38870-2", abstract = "Mitochondrial replacement techniques (MRTs) are designed to prevent the transmission of mitochondrial DNA (mtDNA) diseases from mother to child. While MRTs, if effective, could satisfy a desire of women seeking to have a genetically related child without the risk of passing on mtDNA disease, the technique raises significant ethical and social issues. It would create offspring who have genetic material from two women, something never sanctioned in humans, and would create mitochondrial changes that could be heritable (in female offspring), and therefore passed on in perpetuity. The manipulation would be performed on eggs or embryos, would affect every cell of the resulting individual, and once carried out this genetic manipulation is not reversible.\n\nMitochondrial Replacement Techniques considers the implications of manipulating mitochondrial content both in children born to women as a result of participating in these studies and in descendants of any female offspring. This study examines the ethical and social issues related to MRTs, outlines principles that would provide a framework and foundation for oversight of MRTs, and develops recommendations to inform the Food and Drug Administration's consideration of investigational new drug applications.\n", url = "https://nap.nationalacademies.org/catalog/21871/mitochondrial-replacement-techniques-ethical-social-and-policy-considerations", year = 2016, publisher = "The National Academies Press", address = "Washington, DC" }