@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 = "Institute of Medicine", editor = "Edward A. Dauer", title = "Blood Banking and Regulation: Procedures, Problems, and Alternatives", isbn = "978-0-309-05546-8", abstract = "This volume examines regulatory and policymaking procedures in blood banking, regulatory enforcement and compliance, innovations and alternatives in regulation, congressional oversight and regulatory initiatives, and investment in regulatory quality.", url = "https://nap.nationalacademies.org/catalog/5310/blood-banking-and-regulation-procedures-problems-and-alternatives", year = 1996, publisher = "The National Academies Press", address = "Washington, DC" } @BOOK{NAP author = "Institute of Medicine", editor = "Henrik Bendixen and Frederick Manning and Linette Sparacino", title = "Blood and Blood Products: Safety and Risk", isbn = "978-0-309-05583-3", abstract = "This volume explores the safety and availability of the nation's supply of blood and blood components. It discusses the risks of disease transmission, methods of guarding the blood supply, new ideas on safety and monitoring, risk tolerance, risk communication, and no-fault insurance.", url = "https://nap.nationalacademies.org/catalog/5395/blood-and-blood-products-safety-and-risk", year = 1996, 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 = "LeighAnne Olsen and J. Michael McGinnis", title = "Redesigning the Clinical Effectiveness Research Paradigm: Innovation and Practice-Based Approaches: Workshop Summary", isbn = "978-0-309-11988-7", abstract = "Recent scientific and technological advances have accelerated our understanding of the causes of disease development and progression, and resulted in innovative treatments and therapies. Ongoing work to elucidate the effects of individual genetic variation on patient outcomes suggests the rapid pace of discovery in the biomedical sciences will only accelerate. However, these advances belie an important and increasing shortfall between the expansion in therapy and treatment options and knowledge about how these interventions might be applied appropriately to individual patients. The impressive gains made in Americans' health over the past decades provide only a preview of what might be possible when data on treatment effects and patient outcomes are systematically captured and used to evaluate their effectiveness. Needed for progress are advances as dramatic as those experienced in biomedicine in our approach to assessing clinical effectiveness. \n\nIn the emerging era of tailored treatments and rapidly evolving practice, ensuring the translation of scientific discovery into improved health outcomes requires a new approach to clinical evaluation. A paradigm that supports a continual learning process about what works best for individual patients will not only take advantage of the rigor of trials, but also incorporate other methods that might bring insights relevant to clinical care and endeavor to match the right method to the question at hand. \n\nThe Institute of Medicine Roundtable on Value & Science-Driven Health Care's vision for a learning healthcare system, in which evidence is applied and generated as a natural course of care, is premised on the development of a research capacity that is structured to provide timely and accurate evidence relevant to the clinical decisions faced by patients and providers. As part of the Roundtable's Learning Healthcare System series of workshops, clinical researchers, academics, and policy makers gathered for the workshop Redesigning the Clinical Effectiveness Research Paradigm: Innovation and Practice-Based Approaches. Participants explored cutting-edge research designs and methods and discussed strategies for development of a research paradigm to better accommodate the diverse array of emerging data resources, study designs, tools, and techniques. Presentations and discussions are summarized in this volume.", url = "https://nap.nationalacademies.org/catalog/12197/redesigning-the-clinical-effectiveness-research-paradigm-innovation-and-practice-based", year = 2010, publisher = "The National Academies Press", address = "Washington, DC" }