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To help learn more about ALS, the federal Agency for Toxic Substances and Disease Registry (ATSDR) maintains the National ALS Registry (Registry).1,2The Registry identifies ALS cases using national administrative databases, including those from Medicaid, Medicare, and the Veterans Health Administration and Veterans Benefits Administration, and b...
Information and assistance for people recently diagnosed with ALS or recently referred to the ALS Association. Consultation on the use of equipment, home adaptations and computer-enhanced communication devices, as well as an equipment loan pool.
The ALS Patient Care Database (ALS C.A.R.E) (1996-2005) was the first large-scale effort to track the disease course and outcomes of patients with amyotrophic lateral sclerosis. The project enrolled over 6000 patients from more than 300 clinical sites in the USA.
21 kwi 2015 · This paper describes the data collection methodology, the incidence and prevalence of ALS in Florida, and the demographic characteristics of Floridians diagnosed with ALS.
11 sty 2000 · Objective: The ALS Patient Care Database was created to improve the quality of care for patients with ALS by 1) providing neurologists with data to evaluate and improve their practices, 2) publishing data on temporal trends in the care of patients with ALS, and 3) developing hypotheses to be tested during formal clinical trials.
The ALS Association prepared the Patient Bill of Rights to inform people living with ALS about their rights related to health care and health plan insurance coverage.*
We compared the cases of ALS identified by the two different case ascertainment methods, the National ALS Registry and the state and metropolitan surveillance project. In brief, the National ALS Registry uses a two-pronged approach, i.e. administrative databases and self-registration.
