Sharing Clinical Trial Data

Sharing Clinical Trial Data
Author: Institute of Medicine
Publisher: National Academies Press
Total Pages: 236
Release: 2015-04-20
Genre: Medical
ISBN: 0309316324

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 investigators. At the same time, sharing clinical trial data presents risks, burdens, and challenges. These include the need to protect the privacy and honor the consent of clinical trial participants; safeguard the legitimate economic interests of sponsors; and guard against invalid secondary analyses, which could undermine trust in clinical trials or otherwise harm public health. Sharing Clinical Trial Data presents activities and strategies for the responsible sharing of clinical trial data. With the goal of increasing scientific knowledge to lead to better therapies for patients, this book identifies guiding principles and makes recommendations to maximize the benefits and minimize risks. This report offers guidance on the types of clinical trial data available at different points in the process, the points in the process at which each type of data should be shared, methods for sharing data, what groups should have access to data, and future knowledge and infrastructure needs. Responsible sharing of clinical trial data will allow other investigators to replicate published findings and carry out additional analyses, strengthen the evidence base for regulatory and clinical decisions, and increase the scientific knowledge gained from investments by the funders of clinical trials. The recommendations of Sharing Clinical Trial Data will be useful both now and well into the future as improved sharing of data leads to a stronger evidence base for treatment. This book will be of interest to stakeholders across the spectrum of research-from funders, to researchers, to journals, to physicians, and ultimately, to patients.

Envisioning a Transformed Clinical Trials Enterprise in the United States

Envisioning a Transformed Clinical Trials Enterprise in the United States
Author: Institute of Medicine
Publisher: National Academies Press
Total Pages: 248
Release: 2012-09-13
Genre: Medical
ISBN: 0309253187

There is growing recognition that the United States' clinical trials enterprise (CTE) faces great challenges. There is a gap between what is desired - where medical care is provided solely based on high quality evidence - and the reality - where there is limited capacity to generate timely and practical evidence for drug development and to support medical treatment decisions. With the need for transforming the CTE in the U.S. becoming more pressing, the IOM Forum on Drug Discovery, Development, and Translation held a two-day workshop in November 2011, bringing together leaders in research and health care. The workshop focused on how to transform the CTE and discussed a vision to make the enterprise more efficient, effective, and fully integrated into the health care system. Key issue areas addressed at the workshop included: the development of a robust clinical trials workforce, the alignment of cultural and financial incentives for clinical trials, and the creation of a sustainable infrastructure to support a transformed CTE. This document summarizes the workshop.

Neuroscience Trials of the Future

Neuroscience Trials of the Future
Author: National Academies of Sciences, Engineering, and Medicine
Publisher: National Academies Press
Total Pages: 111
Release: 2016-11-07
Genre: Medical
ISBN: 0309442583

On March 3-4, 2016, the National Academies of Sciences, Engineering, and Medicine's Forum on Neuroscience and Nervous System Disorders held a workshop in Washington, DC, bringing together key stakeholders to discuss opportunities for improving the integrity, efficiency, and validity of clinical trials for nervous system disorders. Participants in the workshop represented a range of diverse perspectives, including individuals not normally associated with traditional clinical trials. The purpose of this workshop was to generate discussion about not only what is feasible now, but what may be possible with the implementation of cutting-edge technologies in the future.

Virtual Clinical Trials

Virtual Clinical Trials
Author: National Academies of Sciences, Engineering, and Medicine
Publisher: National Academies Press
Total Pages: 127
Release: 2019-11-16
Genre: Medical
ISBN: 0309494885

Successful drug development relies on accurate and efficient clinical trials to deliver the best and most effective pharmaceuticals and clinical care to patients. However, the current model for clinical trials is outdated, inefficient and costly. Clinical trials are limited by small sample sizes that do not reflect variations among patients in the real world, financial burdens on participants, and slow processes, and these factors contribute to the disconnect between clinical research and clinical practice. On November 28-29, the National Academies of Sciences, Engineering, and Medicine convened a workshop to investigate the current clinical trials system and explore the potential benefits and challenges of implementing virtual clinical trials as an enhanced alternative for the future. This publication summarizes the presentations and discussions from the workshop.

Transforming Clinical Research in the United States

Transforming Clinical Research in the United States
Author: Institute of Medicine
Publisher: National Academies Press
Total Pages: 151
Release: 2010-10-22
Genre: Medical
ISBN: 0309163358

An ideal health care system relies on efficiently generating timely, accurate evidence to deliver on its promise of diminishing the divide between clinical practice and research. There are growing indications, however, that the current health care system and the clinical research that guides medical decisions in the United States falls far short of this vision. The process of generating medical evidence through clinical trials in the United States is expensive and lengthy, includes a number of regulatory hurdles, and is based on a limited infrastructure. The link between clinical research and medical progress is also frequently misunderstood or unsupported by both patients and providers. The focus of clinical research changes as diseases emerge and new treatments create cures for old conditions. As diseases evolve, the ultimate goal remains to speed new and improved medical treatments to patients throughout the world. To keep pace with rapidly changing health care demands, clinical research resources need to be organized and on hand to address the numerous health care questions that continually emerge. Improving the overall capacity of the clinical research enterprise will depend on ensuring that there is an adequate infrastructure in place to support the investigators who conduct research, the patients with real diseases who volunteer to participate in experimental research, and the institutions that organize and carry out the trials. To address these issues and better understand the current state of clinical research in the United States, the Institute of Medicine's (IOM) Forum on Drug Discovery, Development, and Translation held a 2-day workshop entitled Transforming Clinical Research in the United States. The workshop, summarized in this volume, laid the foundation for a broader initiative of the Forum addressing different aspects of clinical research. Future Forum plans include further examining regulatory, administrative, and structural barriers to the effective conduct of clinical research; developing a vision for a stable, continuously funded clinical research infrastructure in the United States; and considering strategies and collaborative activities to facilitate more robust public engagement in the clinical research enterprise.

A National Cancer Clinical Trials System for the 21st Century

A National Cancer Clinical Trials System for the 21st Century
Author: Institute of Medicine
Publisher: National Academies Press
Total Pages: 317
Release: 2010-07-08
Genre: Medical
ISBN: 0309157870

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 to transform the Cooperative Group Program into a dynamic system that efficiently responds to emerging scientific knowledge; involves broad cooperation of stakeholders; and leverages evolving technologies to provide high-quality, practice-changing research.

Beyond the HIPAA Privacy Rule

Beyond the HIPAA Privacy Rule
Author: Institute of Medicine
Publisher: National Academies Press
Total Pages: 334
Release: 2009-03-24
Genre: Computers
ISBN: 0309124999

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.

Survey Methods in Community Medicine

Survey Methods in Community Medicine
Author: Joseph Herbert Abramson
Publisher:
Total Pages: 419
Release: 1999
Genre: Medical
ISBN: 9780443061639

Presenting the newest edition of this popular text, providing a guide to the basics of planning a medical survey. Doctors, students, and anyone interested in conducting medical surveys will benefit from this practical, systematic, and accessible guide to the design, conduct, and analysis of studies. Also, all new practical advice on investigating a community, as well as coverage of the basics of the subject, i.e. formulating the objectives, methods of collecting data, and more!

Oxford Textbook of Global Public Health

Oxford Textbook of Global Public Health
Author: Roger Detels
Publisher: Oxford University Press
Total Pages: 1717
Release: 2017
Genre: Medical
ISBN: 019881013X

Sixth edition of the hugely successful, internationally recognised textbook on global public health and epidemiology, with 3 volumes comprehensively covering the scope, methods, and practice of the discipline

Oxford Textbook of Palliative Social Work

Oxford Textbook of Palliative Social Work
Author: Terry Altilio MSW, ACSW, LCSW
Publisher: Oxford University Press
Total Pages: 847
Release: 2011-03-23
Genre: Medical
ISBN: 0199838275

The Oxford Textbook of Palliative Social Work is a comprehensive, evidence-informed text that addresses the needs of professionals who provide interdisciplinary, culturally sensitive, biopsychosocial-spiritual care for patients and families living with life-threatening illness. Social workers from diverse settings will benefit from its international scope and wealth of patient and family narratives. Unique to this scholarly text is its emphasis on the collaborative nature inherent in palliative care. This definitive resource is edited by two leading palliative social work pioneers who bring together an array of international authors who provide clinicians, researchers, policy-makers, and academics with a broad range of content to enrich the guidelines recommended by the National Consensus Project for Quality Palliative Care.