New Jersey ALS Surveillance Project

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Project Objectives and Highlights

The New Jersey Department of Health (NJDOH) completed a three-year, state-wide Amyotrophic Lateral Sclerosis (ALS; otherwise known as Lou Gehrig’s disease) public health surveillance project.

Project Objectives

This surveillance project was conducted:

  • To obtain reliable and timely information on the incidence and prevalence of ALS in New Jersey,

  • To better describe the demographic characteristics of ALS in New Jersey,

  • To assist the federal Agency for Toxic Substances and Disease Registry (ATSDR) in evaluating the completeness of the National ALS Registry.

Project Highlights

  • New Jersey is one of three states and eight metropolitan areas to conduct this population-based surveillance of ALS.

  • Neurologists targeted for outreach and recruitment efforts included all neurologists practicing within the states of NJ and Delaware, two counties in downstate New York, the county of Philadelphia, PA; as well as a targeted list of ALS specialists practicing in Allentown, PA and the local New York region.

  • ALS patients residing in New Jersey and under a neurologist’s care between January 2009 and December 2011 were eligible to be reported by neurologists. No patients were contacted as part of this project. Data collection began in May 2011 and concluded in June 2012.

Information about the project and project findings can be found in the Project Summary.

  • The project’s methods and findings have been presented at many national conferences.

  • The ALS surveillance team is grateful to all of the participating neurologists and staff, for without their support and participation, this project would not have been successful.