310
Views
28
CrossRef citations to date
0
Altmetric
Epidemiology, Phenotyping

Feasibility of creating a National ALS Registry using administrative data in the United States

, &
Pages 433-439 | Received 17 Sep 2013, Accepted 20 Jan 2014, Published online: 06 Mar 2014

References

  • Bobowick AR, Brody JA. Epidemiology of motor neuron diseases. N Engl J Med. 1973;288:1047–55.
  • Mitsumoto H, Chad DA, Pioro EP. Amyotrophic Lateral Sclerosis. Philadelphia: F.A. Davis Company; 1998.
  • Eisen A. Amyotrophic lateral sclerosis is a multifactorial disease. Muscle Nerve. 1995;18:741–52.
  • Chio A. Risk factors in the early diagnosis of ALS: European epidemiological studies. Amyotroph Lateral Scler Other Motor Neuron Disord. 2000;1(Suppl 1):S13–8.
  • Kondo K. Motor neuron disease: changing population patterns and clues for etiology. Adv Neurol. 1978;19:509–43.
  • Maasilta P, Jokelainen M, Loytonen M, Sabel CE, Gatrell AC. Mortality from amyotrophic lateral sclerosis in Finland, 1986–1995. Acta Neurol Scand. 2001;104:232–5.
  • Litt J, Tran N, Malecki KC, Neff R, Resnick B, Burke T. Identifying priority health conditions, environmental data, and infrastructure needs: a synopsis of the Pew Environmental Health tracking project. Environ Health Perspect. 2004; 112:1414–8.
  • Brown RC, Lockwood AH, Sonawane BR. Neurodegenerative diseases: an overview of environmental risk factors. Environ Health Perspect. 2005;113:1250–6.
  • The Scottish Motor Neuron Disease Registry: a prospective study of adult onset motor neuron disease in Scotland. Methodology, demography and clinical features of incident cases in 1989. J Neurol Neurosurg Psychiatry. 1992;55: 536–41.
  • Forbes RB, Colville S, Cran GW, Swinger RF. Unexpected decline in survival from amyotrophic lateral sclerosis/motor neuron disease. J Neurol Neurosurg Psychiatry. 2004; 75:1753–5.
  • Traynor BJ, Codd MB, Corr B, Forde C, Frost E, Hardiman O. Incidence and prevalence of ALS in Ireland, 1995–1997: a population based study. Neurology. 1999;52: 504–9.
  • Piemonte and Valle d’Aosta Register for Amyotrophic Lateral Sclerosis (PARALS). Incidence of ALS in Italy: evidence for a uniform frequency in Western countries. Neurology. 2001;56:239–44.
  • Logroscino G, Beghi E, Zoccolella S, Palagano R, Fraddosio A, Simone IL, et al., SLAP Registry. Incidence of amyotrophic lateral sclerosis in southern Italy: a population based study. J Neurol Neurosurg Psychiatry. 2005;76: 1094–8.
  • Beghi E, On Behalf Of The European ALS Register Eurals Group. 127th ENMC International Workshop: Implementation of a European Registry of ALS Naarden, The Netherlands, 8–10 October 2004. Neuromuscul Disord. 2006;16: 46–53.
  • Miller RG, Anderson FA, Bradley WG, Brooks BR, Mitsumoto H, Munsat TL, Ringel SP, and the ALS C.A.R.E. Study Group. The ALS Patient Care Database: goals, design, and early results. Neurology. 2000;54:53–7.
  • Kasarkis EJ, Dominic K, Oddone EZ. The National Registry of Veterans with Amyotrophic Lateral Sclerosis: Department of Veterans Affairs Cooperative Studies Program (CSP) #500a. Amyotroph Lateral Scler Other Motor Neuron Disord. 2004;5(Suppl 1):129–32.
  • Brooks BR. El Escorial World Federation of Neurology criteria for the diagnosis of amyotrophic lateral sclerosis. Subcommittee on Motor Neuron Diseases/Amyotrophic Lateral Sclerosis of the World Federation of Neurology Research Group on Neuromuscular Diseases and the El Escorial ‘Clinical limits of amyotrophic lateral sclerosis’ workshop contributors. J Neurol Sci. 1994;124(Suppl):96–107.
  • Stickler DE, Royer JA, Hardin JW. Validity of hospital discharge data for identifying cases of amyotrophic lateral sclerosis. Muscle Nerve. 2011;44:814–6.
  • Benatar M, Wuu J, Usher S, Ward K. Preparing for the U.S. National ALS Registry: lessons from a pilot project in the State of Georgia. Amyotroph Lateral Scler. 2011; 12:130–5.
  • Benesch C, Witter DM, Wilder AL, Duncan PW, Samsa GP, Matchar DB. Inaccuracy of the International Classification of Diseases (ICD-9-CM) in identifying the diagnosis of ischemic cerebrovascular disease. Neurology. 1997;49:660–4.
  • Tennis P, Bombardier C, Malcolm E, Downey W. Validity of rheumatoid arthritis diagnoses listed in the Saskatchewan hospital separation database. J Clin Epidemiol. 1993;46: 675–83.
  • Katz JN, Barrett J, Liang MH, Bacon AM, Kaplan H, Kieval RI, et al. Sensitivity and positive predictive value of Medicare Part B physician claims for rheumatologic diagnoses and procedures. Arthritis Rheum. 1997;40:1594–600.
  • Cooper GS, Yuan Z, Stange KC, Dennis LK, Amini SB, Rimm AA. The sensitivity of Medicare claims data for case ascertainment of six common cancers. Med Care. 1999; 37:436–44.
  • Fisher ES, Whaley FS, Krushat M, Malenka DJ, Fleming C, Baron JA, et al. The accuracy of Medicare's hospital claims data: progress has been made, but problems remain. Am J Public Health. 1992;82:243–8.
  • Peabody JW, Luck J, Sharad J, Bertenthal D, Glassman P. Assessing the accuracy of administrative data in health information systems. Med Care. 2004;11:1066–70.
  • Humphries KH, Rankin JM, Carere RG, Buller CE, Kiely FM. Spinelli JJ. Comorbidity data in outcomes research: are clinical data derived from administrative databases a reliable alternative to chart review? J Clin Epidemiol. 2000; 53:343–9.
  • Green J, Wintfeld N. How accurate are hospital discharge data for evaluating effectiveness of care? Med Care. 1993; 31:719–31.
  • Worth RM, Mytinger RE. Medical insurance claims as a source of data for research: accuracy of diagnostic coding. Hawaii Med J. 1996;55:9–11.
  • Szeto HC, Coleman RK, Gholami P, Hoffman BB, Goldstein MK. Accuracy of computerized outpatient diagnoses in a Veterans Affairs general medicine clinic. Am J Manag Care. 2002;8:37–43.
  • Wang PS, Walker A, Tsuang M, Orav EJ, Levin R, Avorn J. Strategies for improving comorbidity measures based on Medicare and Medicaid claims data. J Clin Epidemiol. 2000;53:571–8.
  • Bright RA, Avorn J, Everitt DE. Medicaid data as a resource for epidemiologic studies: strengths and limitations. J Clin Epidemiol. 1989;10:937–45.
  • Fisher ES, Baron JA, Malenka DJ, Barrett J, Bubolz TA. Overcoming potential pitfalls in the use of Medicare data for epidemiologic research. Am J Public Health. 1990;80: 1487–90.
  • Pope GC, Urato CJ, Kulas ED, Kronick R, Gilmer T. Prevalence, expenditures, utilization, and payment for persons with MS in insured populations. Neurology. 2002;58: 37–43.
  • Taylor DH, Fillenbaum GG, Ezell ME. The accuracy of Medicare claims data in identifying Alzheimer's disease. J Clin Epidemiol. 2000;55:929–37.
  • Thacker SB, Stroup DF. Future directions for comprehensive public health surveillance and health information systems in the United States. Am J Epidemiol. 1994; 140:383–97.
  • Allen KD, Kasarskis EJ, Bedlack RS, Rozear MP, Morgenlander JC, Sabet A, et al. The national registry of veterans with amyotrophic lateral sclerosis. Neuroepidemiology. 2008;30:180–90.

Reprints and Corporate Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

To request a reprint or corporate permissions for this article, please click on the relevant link below:

Academic Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

Obtain permissions instantly via Rightslink by clicking on the button below:

If you are unable to obtain permissions via Rightslink, please complete and submit this Permissions form. For more information, please visit our Permissions help page.