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Neurology. 2013 Dec 10;81(24):2136-40. doi: 10.1212/01.wnl.0000437305.37850.f9. Epub 2013 Nov 22.

Quality improvement in neurology: amyotrophic lateral sclerosis quality measures: report of the quality measurement and reporting subcommittee of the American Academy of Neurology.

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From the Forbes Norris MDA/ALS Research Center (R.G.M., D.F.), California Pacific Medical Center, San Francisco, CA; Carolinas Neuromuscular/ALS-MDA Center, Carolinas HealthCare System and Departments of Neurology (B.R.B., M.S.) and Kinesiology (M.S.), Carolinas Medical Center, University of North Carolina School of Medicine-Charlotte Campus, Charlotte, NC; American Academy of Neurology (R.J.S.-E.), Minneapolis, MN; Division of Pulmonary Medicine (R.C.B.), Columbia University College of Physicians and Surgeons, New York, NY; St. Luke's Rehabilitation Institute (G.T.C.), Spokane, WA; Department of Neurology (P.C.), Northwestern Medical Faculty Foundation, Chicago, IL; Massachusetts General Hospital and Harvard Medical School (A.B.C.), Boston, MA; Department of Neurology (R.D.), University of Kansas, Kansas City, KS; Department of Neurology (C.E.J.), University of Texas Health Science Center, San Antonio, TX; Department of Neurology (E.K.), University of Kentucky, Lexington, KY; Swedish Medical Center and University of Washington (N.J.P.), Seattle, WA; and Humana (F.P.T.), Chicago, IL.


Amyotrophic lateral sclerosis (ALS) is a lethal, progressive neurodegenerative disease characterized by loss of motor neurons.(1) Patients with ALS lose function in the limbs, speech, swallowing, and breathing muscles. The cause of the disease is still not known for most patients. Approximately 25,000 people in the United States have ALS, and 5,000 people are diagnosed with ALS annually in the United States.(1) Most patients die from respiratory failure 2 to 5 years after onset of symptoms. Cognitive dysfunction is seen in 20% to 50% of patients.(2) The disease burden for patients and caregivers is enormous. The average cost of care has been estimated at $50,000 per patient per year.(3.).

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