ABSTRACT
Tracking in Action: Establishing Incidence and Prevalence of
Amyotrophic Lateral Sclerosis (ALS) [1]
Authors: Heather Jordan, MPH, CPH, MCHES, Jerald Fagliano, Kevin A. Henry, PhD,
and Richard E. Opiekun; New Jersey Department of Health
Background:
Amyotrophic lateral sclerosis (ALS), or Lou Gehrig’s disease, is a rare, incurable,
progressive neurological disease.Five to 10% of ALS cases are inherited, and causes of
remaining cases are not well understood. Suggested environmental risk factors include
blue-green algae, magnetic fields, pesticides, trace minerals, and heavy metal
exposure.There was a need to establish disease incidence and prevalence rates, and to
examine how incidence varied by demographic and socio-economic characteristics.
Methods:
The NJ Department of Health conducted a state-wide surveillance project to document
ALS cases. Neurologists in the region submitted case reports for patients under their
care between January 1, 2009 and December 31, 2011. Diagnosis confirmation was
achieved through medical record verification on a patient subset. Mortality records were
used for supplemental case identification and to determine survival. State-wide ageadjusted incidence rates, prevalence, and survival by age, sex, race, and
ethnicitywerecalculated. Data were examined utilizing a spatial scan statistic to identify
potential geographic clusters of cases, and examine incidence by area-based SES. NJ
Tracking used these data to develop an ALS indicator for display on the New Jersey
health data portal.
Results:
The average annual age-adjusted ALS incidence rate was 1.7 cases per 100,000
persons. Point prevalence was 4.4 cases per 100,000 persons as of December 31,
2011. ALS was more common in men than women, and increased with age. ALS rates
were higher in whites and non-Hispanics than other racial or ethnic groups.Ageadjusted ALS incidence rates increased by census tract average income.No statistically
significant geographic clusters of ALS incidence were found. Median survival from
diagnosis to death for incident cases was 21 months, and increased age was a
predictor of shorter survival.
Conclusions:
The project expands the scientific understanding of ALS occurrence, and provides the
first state-wide ALS incidence, prevalence, and survival rates by demographic groups.
Project data were used by NJ Tracking to construct an ALS indicator for display on New
Jersey’s health data portal. The project illustrates how Tracking partnerships can
enhance chronic disease surveillance and help make chronic disease data available to
the general public, health planners, and advocacy organizations.