New Jersey ALS Surveillance Project

Select textsizemediumlargelarger

Data Collection

Data Collection

Data collection started in May, 2011. Patients diagnosed or treated from January 1, 2009 through December 31, 2011 who reside in New Jersey will be reported by their neurologists. HIPAA explicitly permits providers to release this information to the state health department to conduct public health surveillance without a HIPAA authorization.

Case Ascertainment

A neurologist or a member of his or her staff will fill out a brief, one-page ALS Case Reporting Form [pdf 178k] for each eligible ALS patient. The ALS Case Reporting Form contains 15 items and is designed to take no longer than ten minutes to complete. Completed ALS Case Reporting Forms should be submitted to the New Jersey Department of Health (DOH) via our secured fax line at (609) 292-5677.

Case Re-abstraction

A sample of cases will be chosen by the DOH for case re-abstraction. Case re-abstraction will be completed by an ALS Surveillance Project team member.

Case Verification

A random sample of cases will be chosen for case verification. Each reporting neurologist will be responsible for completing at least one Medical Record Verification Form [pdf 136k] on at least one of his or her reported cases. The Medical Record Verification Form may take upwards of twenty minutes to complete.


The ALS Surveillance Project team will train (Training Presentation) [pdf 206k] each participating neurologist and/or their staff in completion of both the case reporting form and the case verification form. The ALS Surveillance Specialist will be available by phone or email to troubleshoot as needed.


DOH project staff may be able to offer compensation to help offset expenses for time and effort related to filling out the ALS Case Reporting Forms and the Medical Record Verification Forms. Please contact us for more details.