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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
- 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.