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.