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      Prevalence of Amyotrophic Lateral Sclerosis — United States, 2012–2013

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          Global Epidemiology of Amyotrophic Lateral Sclerosis: A Systematic Review of the Published Literature

          A Chiò, G. Logroscino, B.J Traynor … (2013)
          Background: Amyotrophic lateral sclerosis (ALS) is relatively rare, yet the economic and social burden is substantial. Having accurate incidence and prevalence estimates would facilitate efficient allocation of healthcare resources. Objective: To provide a comprehensive and critical review of the epidemiological literature on ALS. Methods: MEDLINE and EMBASE (1995-2011) databases of population-based studies on ALS incidence and prevalence reporting quantitative data were analyzed. Data extracted included study location and time, design and data sources, case ascertainment methods and incidence and/or prevalence rates. Medians and interquartile ranges (IQRs) were calculated, and ALS case estimates were derived using 2010 population estimates. Results: In all, 37 articles met the inclusion criteria. In Europe, the median incidence rate (/100,000 population) was 2.08 (IQR 1.47-2.43), corresponding to an estimated 15,355 (10,852-17,938) cases. Median prevalence (/100,000 population) was 5.40 (IQR 4.06-7.89), or 39,863 (29,971-58,244) prevalent cases. Conclusions: Disparity in rates among ALS incidence and prevalence studies may be due to differences in study design or true variations in population demographics such as age and geography, including environmental factors and genetic predisposition. Additional large-scale studies that use standardized case ascertainment methods are needed to more accurately assess the true global burden of ALS.
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            The accuracy of medicare claims data in identifying Alzheimer's disease.

            Donald H Taylor, Gerda Fillenbaum, Michael Ezell (2002)
            We linked Medicare claims data to information on 417 patients with a clinical diagnosis of Alzheimer's disease in the Consortium to Establish a Registry for Alzheimer's Disease (CERAD) to determine what proportion of them were identified as having Alzheimer's disease (AD) in Medicare claims records. Seventy-nine percent of these patients were identified as having AD using 5 years of claims data; 87% were identified as demented when a broader set of ICD-9-CM codes was used. An Anderson-Gill counting process approach was used to model the "hazard" of patients being identified as having AD in Medicare claims data. CERAD patients with mild dementia were less likely to be identified in the claims data as having AD. Once identified in Medicare claims as having AD, patients were more likely to be so identified again. When using only the physician supplier and institutional outpatient files, approximately 75% of CERAD patients were identified as having AD; hospital files used alone identified less than one-third (29%) of the CERAD patients as having AD. The data indicate that at least 3 consecutive years of physician supplier and physician outpatient claim files should be used to identify Medicare beneficiaries with AD using Medicare claims.
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              Lumbar intraspinal injection of neural stem cells in patients with amyotrophic lateral sclerosis: results of a phase I trial in 12 patients.

              Seward B. Rutkove, Jonathan Glass, Meraida Polak … (2012)
              Advances in stem cell biology have generated intense interest in the prospect of transplanting stem cells into the nervous system for the treatment of neurodegenerative diseases. Here, we report the results of an ongoing phase I trial of intraspinal injections of fetal-derived neural stems cells in patients with amyotrophic lateral sclerosis (ALS). This is a first-in-human clinical trial with the goal of assessing the safety and tolerability of the surgical procedure, the introduction of stem cells into the spinal cord, and the use of immunosuppressant drugs in this patient population. Twelve patients received either five unilateral or five bilateral (10 total) injections into the lumbar spinal cord at a dose of 100,000 cells per injection. All patients tolerated the treatment without any long-term complications related to either the surgical procedure or the implantation of stem cells. Clinical assessments ranging from 6 to 18 months after transplantation demonstrated no evidence of acceleration of disease progression due to the intervention. One patient has shown improvement in his clinical status, although these data must be interpreted with caution since this trial was neither designed nor powered to measure treatment efficacy. These results allow us to report success in achieving the phase I goal of demonstrating safety of this therapeutic approach. Based on these positive results, we can now advance this trial by testing intraspinal injections into the cervical spinal cord, with the goal of protecting motor neuron pools affecting respiratory function, which may prolong life for patients with ALS. Copyright © 2012 AlphaMed Press.
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                Author and article information

                Journal
                Title: MMWR. Surveillance Summaries
                Abbreviated Title: MMWR Surveill. Summ.
                Publisher: Centers for Disease Control MMWR Office
                ISSN (Print): 1546-0738
                ISSN (Electronic): 1545-8636
                Publication date Created: August 05 2016
                Publication date (Print): August 05 2016
                Volume: 65
                Issue: 8
                Pages: 1-12
                Article
                DOI: 10.15585/mmwr.ss6508a1
                PubMed ID: 27490513
                SO-VID: 57f4fb8f-6096-440a-8b02-4ab6c64ab9e7
                Copyright © © 2016
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