UMass Chan AffiliationsCenter for Outcomes Research
KeywordsAmyotrophic Lateral Sclerosis
*Patient Care Planning
Health Services Administration
Health Services Research
Nervous System Diseases
Nutritional and Metabolic Diseases
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AbstractThe Amyotrophic Lateral Sclerosis Clinical Assessment, Research, and Education Project (ALS CARE) will conduct outcomes research and develop educational programs that benefit ALS patients and neurologists. An advisory board of neurologists, who are experts in ALS, will establish the policies governing this project and control the dissemination of aggregate data on ALS practices and outcomes. As a first step toward improving the care of ALS patients, a data coordinating center has been established in the Center for Outcomes Research at the University of Massachusetts Medical Center, which will manage a North American Database of ALS Outcomes. This voluntary database is designed to (1) guide the development of educational programs to improve the care of ALS patients and (2) provide a mechanism for neurologists to evaluate the impact of their diagnostic and therapeutic decisions in a manner that is timely, confidential, and objective.
Neurology. 1996 Oct;47(4 Suppl 2):S113-5; discussion S115-6.