State-Metro ALS Surveillance

ATSDR funded state and metropolitan area-based surveillance projects to support the National ALS Registry.

Selected state and metropolitan area ALS surveillance projects were conducted to:

  • Assist ATSDR in evaluating the completeness of the National ALS Registry.
  • Obtain reliable and timely information on the incidence and prevalence of ALS.
  • Better describe the age, sex, race and other characteristics of persons with ALS (PALS).
State-Metro participating State

Methods

State and metropolitan areas project staff contacted neurologists to report persons with ALS.

State and metropolitan areas were selected to over-represent minority populations because of concerns that these groups might be missing from the National ALS Registry.

  • Participating States: Florida, New Jersey and Texas.
  • Participating Metropolitan Areas: Atlanta, Chicago, Baltimore, Detroit, Las Vegas, Los Angeles, Philadelphia and San Francisco.

 

Recruitment of Neurologists

To identify neurologists who diagnose or provide care for PALS:

  • Lists of neurologists were obtained from outside vendors, state licensing boards, and other resources.
  • Neurologists specializing in pediatric neurology or neurosurgery in urban areas and those no longer practicing in the area (e.g., moved or deceased) were removed from the lists.
  • Letters were sent and phone calls were made to the neurologists to determine if they diagnosed or treated PALS during the three year project period.

Every neurologist who diagnosed and/or provided care to a person with ALS from January 1, 2009 – December 31, 2011 was asked to report his case(s).

 

Data Collection

  • The neurologist completed a brief Case Report Form, which included information on demographics, date of diagnosis, and El Escorial Criteria classification, for each person with ALS.
  • A more detailed Medical Records Verification Form was completed on up to 20% of the cases and submitted with an electromyogram (EMG) to the consulting neurologist for verification of diagnosis.
  • Death data were evaluated to identify possible cases of ALS not reported to the surveillance project. When physicians could be identified on death certificates, they were contacted to determine why the person was not reported and attempts were made to collect case reports for eligible decedents.

 

Results

The demographic characteristics of those with ALS are similar to the published literature, i.e., persons with ALS are more likely to be male, white, non-Hispanic, and older. Incidence rates were calculated when data were sufficient and they are also mostly consistent with the published literature. A project summary for each participating State and metropolitan area can be reviewed at the following links:

StateMetro
Atlanta Cdc-pdf[PDF – 231 KB] Baltimore Cdc-pdf[PDF – 229 KB] Chicago Cdc-pdf[PDF – 229 KB] Detroit Cdc-pdf[PDF – 333 KB] Florida  Cdc-pdf[PDF – 230 KB]
Las Vegas Cdc-pdf[PDF – 233 KB] Los Angeles and San Francisco Bay Cdc-pdf[PDF – 240 KB] New Jersey Cdc-pdf[PDF – 331 KB] Philadelphia Cdc-pdf[PDF – 229 KB] Texas Cdc-pdf[PDF – 233 KB]
state
BioRepositoryStudies
Publication Journal Area(s) Covered Statistical Measure
Jordan H, Rechtman L, Fagliano J, Lefkowitz D, Kaye W. Population-based Surveillance of Amyotrophic Lateral Sclerosis in New Jersey, 2009-2011External. Neuroepidemiology 43:49-56 New Jersey Incidence and Prevalence
Freer C, Hilton T, Jordan H, Kaye W, Singh S, Huang Y. 2015. Results of Florida’s Amyotrophic Lateral Sclerosis Surveillance ProjectExternal. BMJ Open.‎ 2015;5:e007359doi:10.1136/bmjopen-2014-007359. Florida Incidence
Jordan H, Fagliano J, Rechtman L, Lefkowitz D, Kaye W. Effects of Demographic Factors on Survival Time after a Diagnosis of Amyotrophic Lateral SclerosisExternal. Neuroepidemiology 44:114-120 New Jersey Survival
Henry K, Fagliano J, Jordan H, Rechtman L, Kaye WE. Geographic Variation of Amyotrophic Lateral Sclerosis Incidence in New Jersey, 2009–2011External. Am J Epidemiol 182(6):512-9 New Jersey Incidence
Rechtman L, Wagner L, Kaye W, Villanacci J. Updated Prevalence and Demographic Characteristics for ALS Cases in Texas, 2009–2011External. Southern Medical Journal 2015 108(8). doi: 10.14423/SMJ.0000000000000324. Texas Prevalence
Valle J, Roberts E, Collins N, Paulukonis S, English P, Kaye W. Epidemiology and Surveillance of Amyotrophic Lateral Sclerosis in Two Large Metropolitan Areas in CaliforniaExternal. Amyotroph Lateral Scler Frontotemporal Degener 2015 Early Online:1-7 Los Angeles and San Francisco California Incidence, Prevalence
Paulukonis ST, Roberts EM, Valle JP, Collins NN, English PB, Kaye WE. Survival and Cause of Death among a Cohort of Confirmed Amyotrophic Lateral Sclerosis CasesExternal. PLoS ONE 10(7): e0131965. doi:10.1371/journal.pone.0131965 Los Angeles and San Francisco California Survival
Rechtman L, Jordan H, Wagner L, Horton K, Kaye W. Racial and ethnic differences among Amyotrophic Lateral Sclerosis (ALS) cases in the United StatesExternal. Amyotroph Lateral Scler Frontotemporal Degener 16:65-71 Atlanta, Baltimore, Chicago, Detroit, Florida, Las Vegas, Los Angeles, New York, Philadelphia, San Francisco, Texas Prevalence
Wagner L, Rechtman L, Jordan H, Ritsick M, Sanchez M, Sorenson E, Kaye, W. State and metropolitan area-based amyotrophic lateral sclerosis (ALS) surveillanceExternal. Amyotroph Lateral Scler Frontotemporal Degener 2015; Sep 23: 1-7. [Epub ahead of print]. Atlanta, Baltimore, Chicago, Detroit, Florida, Las Vegas, Los Angeles, New York, Philadelphia, San Francisco, Texas Prevalence
Jordan H, Rechtman L, Wagner L, Kaye WE. Findings from the Baltimore and Philadelphia Amyotrophic Lateral Sclerosis Surveillance Projects, 2009-2011External. Muscle & Nerve 2015;51:815-821. Baltimore and Philadelphia Prevalence
Kaye W, Wagner L, Wu R, Mehta P. Evaluating the completeness of the national ALS registry, United StatesExternal. Amyotroph Lateral Scler Frontotemporal Degener; 2017; 112-117. Atlanta, Baltimore, Chicago, Detroit, Florida, Las Vegas, Los Angeles, New York, Philadelphia, San Francisco, Texas Multiple logistic regression
Page last reviewed: April 6, 2017