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 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 national conferences, such as the annual conference of the Council of State and Territorial Epidemiologists (CSTE), annual meetings of the American Academy of Neurology (AAN), the annual meeting of the North East ALS Consortium (NEALS), the International Symposium on ALS/MND, and the annual meeting of the American Public Health Association (APHA).

  • 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.