Registries for Evaluating Patient Outcomes

Registries for Evaluating Patient Outcomes
Author: Agency for Healthcare Research and Quality/AHRQ
Publisher: Government Printing Office
Total Pages: 385
Release: 2014-04-01
Genre: Medical
ISBN: 1587634333

This User’s Guide is intended to support the design, implementation, analysis, interpretation, and quality evaluation of registries created to increase understanding of patient outcomes. For the purposes of this guide, a patient registry is an organized system that uses observational study methods to collect uniform data (clinical and other) to evaluate specified outcomes for a population defined by a particular disease, condition, or exposure, and that serves one or more predetermined scientific, clinical, or policy purposes. A registry database is a file (or files) derived from the registry. Although registries can serve many purposes, this guide focuses on registries created for one or more of the following purposes: to describe the natural history of disease, to determine clinical effectiveness or cost-effectiveness of health care products and services, to measure or monitor safety and harm, and/or to measure quality of care. Registries are classified according to how their populations are defined. For example, product registries include patients who have been exposed to biopharmaceutical products or medical devices. Health services registries consist of patients who have had a common procedure, clinical encounter, or hospitalization. Disease or condition registries are defined by patients having the same diagnosis, such as cystic fibrosis or heart failure. The User’s Guide was created by researchers affiliated with AHRQ’s Effective Health Care Program, particularly those who participated in AHRQ’s DEcIDE (Developing Evidence to Inform Decisions About Effectiveness) program. Chapters were subject to multiple internal and external independent reviews.

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Author:
Publisher:
Total Pages: 504
Release: 1991
Genre: Medical libraries
ISBN:

Lysosomal Storage Disorders

Lysosomal Storage Disorders
Author: John A. Barranger
Publisher: Springer Science & Business Media
Total Pages: 563
Release: 2007-10-16
Genre: Science
ISBN: 0387709096

The knowledge of lysosomal biology and the consequences of its dysfunction have increased dramatically in the past 60 years. This book describes the nature of the lysosomal dysfunction and diseases as well as potential future treatments and therapies. Disease specific chapters provide thorough reviews of the clinical features of lysosomal storage disorders, their molecular basis and the commercial or experimental therapeutic approaches sought in this area. This is an invaluable resource for researchers in biochemical and molecular genetics, enzyme therapy, and gene transfer.

A Guide to Genetic Counseling

A Guide to Genetic Counseling
Author: Diane L. Baker
Publisher: Wiley-Liss
Total Pages: 464
Release: 1998-11-05
Genre: Medical
ISBN:

Over the past decade, science has made historic progress in identifying the genetic origins of human development and functioning. From Down syndrome to sickle cell anemia, hereditary cancers to neurologic conditions, genetic tests now exist for dozens of human conditions. Research on the human genome continues apace, and the already considerable demand for genetic counseling services can only intensify as new genetic tests become available. The first book devoted exclusively to the principles and practice of genetic counseling, A Guide to Genetic Counseling prepares genetic counselors and health care providers to meet that demand. Reflecting the experiences and expertise of more than a dozen genetic counseling, medical, and legal professionals, this book defines the theory, goals, and core competencies associated with the practice of genetic counseling. Combining clear step-by-step guidelines with many fascinating and instructive case studies, it tutors readers in the gamut of skills, procedures, and ethical, legal, and psychosocial considerations integral to the genetic counseling process, including: Obtaining family histories and interviewing clients Performing medical genetic evaluations Patient education and psychosocial counseling Developing multicultural skills Case preparation and management Medical documentation Ethical and legal conduct Making the most of computer-based resources Professional development. A Guide to Genetic Counseling belongs on the syllabi of all medical and human genetics and genetics counseling certification programs. It is an indispensable working resource for professional genetic counselors and all health care providers charged with educating patients in genetic diseases.