This book is a B&W copy of the government agency publication.Dementia is a loss of cognitive abilities in multiple domains that results in impairment in normal activities of daily living and loss of independence. Alzheimer's disease (AD) is the most common cause of dementia, responsible for 60 to 80 percent of all dementia. AD causes severe suffering for patients, including progressive functional impairment, loss of independence, emotional distress, and behavioral symptoms. Families and caregivers often experience emotional and financial stress. The major risk factor for AD is age, with the prevalence doubling every 5 years after the age of 65. Most estimates of the prevalence of AD in the United States are about 2.3 million for individuals over age 70, but some estimates are as high as 5.3 million individuals over the age of 65. The number of individuals with mild cognitive impairment exceeds the number with AD. These individuals have mild impairment in cognition or daily functions that does not meet the threshold for a diagnosis of dementia, but they are at increased risk for development of AD, which makes them a prime target for intervention protocols. Studies of selected risk or protective factors for cognitive decline and AD have been published, but it is not clear whether the results of these previous studies are of sufficient strength to warrant specific recommendations for behavioral, lifestyle, or pharmaceutical interventions/modifications targeted to these endpoints. As background for an upcoming State-of-the-Science Conference in April 2010, the National Institutes of Health (NIH) Office of Medical Applications of Research (OMAR) commissioned this evidence report on “Preventing Alzheimer's Disease and Cognitive Decline” through the Agency for Healthcare Research and Quality (AHRQ). The aim is to summarize the available literature, frame the discussion regarding potential risk factors, and highlight the limitations of the evidence base. We synthesized the existing literature on the following key questions: Key Question 1: What factors are associated with the reduction of risk of Alzheimer's disease? Key Question 2: What factors are associated with the reduction of risk of cognitive decline in older adults? Key Question 3: What are the therapeutic and adverse effects of interventions to delay the onset of Alzheimer's disease? Are there differences in outcomes among identifiable subgroups? Key Question 4: What are the therapeutic and adverse effects of interventions to improve or maintain cognitive ability or function? Are there differences in outcomes among identifiable subgroups? Key Question 5: What are the relationships between the factors that affect Alzheimer's disease and the factors that affect cognitive decline? Key Question 6: If recommendations for interventions cannot be made currently, what studies need to be done that could provide the quality and strength of evidence necessary to make such recommendations to individuals?
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.
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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