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Health Indicator Report of Amyotrophic Lateral Sclerosis (ALS), Incidence & Prevalence

Amyotrophic lateral sclerosis (ALS), better known as Lou Gehrig's disease, is a rare, incurable, progressive neurological disease. When nerve cells in the brain and spinal cord responsible for muscle movement degenerate and die, muscles begin to atrophy and eventually patients may become completely paralyzed. Five to 10% of ALS cases are inherited, and the causes of remaining cases are not well understood. ALS is not a reportable disease in New Jersey. New Jersey Department of Health (NJDOH) undertook a surveillance project to establish disease incidence and prevalence rates, and to examine how incidence varied by demographic characteristics in New Jersey.

Notes

The numerator is the number of newly diagnosed cases during 3 years (2009-2011). Additional information is available at http://www.nj.gov/health/als/documents/als_dec2013.pdf.

Data Sources

  • ALS Surveillance Project, Environmental and Occupational Health Surveillance Program, NJ Department of Health
  • U.S. Census Bureau

Definition

A case of amyotrophic lateral sclerosis (ALS) is defined as a New Jersey resident meeting the El Escorial criteria and reported by a neurologist as under their care between January 1, 2009 and December 31, 2011. Rates are age-adjusted to the 2000 U.S. Standard Population and are per 100,000 population.

Numerator

Annual Incidence Rate: Number of newly diagnosed cases in 2009, 2010, or 2011. Point Prevalence: Number of cases alive as of December 31, 2011.

Denominator

Annual Incidence Rate: Defined population in a specified time interval. Point Prevalence: Population at defined point in time.

How Are We Doing?

In NJ there were 493 incident cases reported in 2009-2011. The average annual age-adjusted incidence rate was 1.67 cases per 100,000 persons. Age-specific average annual incidence increased with age until 70-79 years of age. Average annual age-adjusted incidence rates and point prevalence varied by sex, race, and ethnicity. ALS incidence varied across and within counties, but no statistically significant geographic clusters were found. Geographic variation in ALS incidence in NJ appears to be influenced by socioeconomic status and race.

How Do We Compare With the U.S.?

There are limited population-based epidemiological data in the United States. The National ALS Registry, launched in 2008, is maintained by the U.S. Agency for Toxic Substances and Disease Registry (ATSDR). The main goals of the Registry are to better describe the incidence and prevalence of ALS; to examine risk factors that might be associated with the disease; and to better outline demographic factors associated with the disease. The New Jersey ALS Surveillance Project was one of 11 projects to collect case reports for ALS patients in the defined three-year period of 2009-2011. The surveillance projects were established by ATSDR to evaluate the completeness of the National ALS Registry and to describe incidence and prevalence in defined geographic areas.

Available Services

For more information on ALS surveillance: https://wwwn.cdc.gov/ALS/ALSStateMetro.aspx Centers for Disease Control and Prevention/ATSDR ALS National Registry: https://wwwn.cdc.gov/als/default.aspx For more information on ALS services: ALS Association National Office: http://www.alsa.org/ The ALS Association, Greater New York Chapter: http://als-ny.org/ The ALS Association, Greater Philadelphia Chapter: http://www.alsphiladelphia.org/
Page Content Updated On 03/31/2016, Published on 11/15/2016
The information provided above is from the Department of Health's NJSHAD web site (https://nj.gov/health/shad). The information published on this website may be reproduced without permission. Please use the following citation: " Retrieved Thu, 14 December 2017 10:17:07 from Department of Health, New Jersey State Health Assessment Data Web site: https://nj.gov/health/shad ".

Content updated: Wed, 15 Nov 2017 07:52:40 EST