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New Jersey ALS Surveillance Project

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Introduction

Overview and Goals

The New Jersey Department of Health (DOH) is launching a statewide Amyotrophic Lateral Sclerosis (ALS) public health surveillance project. ALS is commonly known as Lou Gehrig’s disease.

DOH is conducting this surveillance project with the following objectives:

  • To obtain reliable and timely information on the incidence and prevalence of ALS in the state

  • To better describe the demographic characteristics of ALS cases

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

Project Highlights

  • Data collection started in May, 2011

  • Patients residing in New Jersey diagnosed or treated between January 2009 and December 2011 should be reported by their neurologists

  • Neurologists will report cases using the ALS Case Reporting Form [pdf 178k]

  • Compensation, through McKing Consulting Corporation, will be available to the reporting physician’s office to offset expenses for staff time required to complete the case reporting forms

  • The Health Insurance Portability and Accountability Act (HIPAA) explicitly permits providers to release patient information to the state health department to conduct public health surveillance without HIPAA authorization

  • No patients will be contacted directly as part of this project

  • Public health surveillance conducted by the DOH does not require patient consent

THEY’RE COUNTING ON YOU TO COUNT THEM IN.