The information below is intended to help neurologists, hospitals, and neurology clinics complete their annual reporting of Amyotrophic Lateral Sclerosis (ALS) cases to the Massachusetts Department of Public Health.

Following state legislation (Massachusetts General Laws Chapter 111, Section 25A, as amended by Section 26 of Chapter 140 of the Acts of 2003) and Massachusetts Department of Public Health regulations on reportable diseases (105 CMR 300.191 and 102), MDPH requires the annual reporting of cases evaluated for or diagnosed with ALS.

Who should report?

All neurologists, hospitals, neurology clinics, and ALS multidisciplinary centers in Massachusetts should report. If you received a letter of request and report form by mail, MDPH requires your response. If there are no cases to be reported, completion and submission of the report form is still requested to help MDPH ensure complete case capture.

MDPH is required to make annual requests of all neurologists in the state including those who do not treat ALS cases. ALS is a relatively rare disease and it is important that the ALS Registry captures every case in order to conduct accurate and complete surveillance.

When should the report be made?

At this time, MDPH requires the reporting of cases on an annual basis. All neurologists, hospitals, neurology clinics, and ALS multidisciplinary centers throughout the state will be contacted at the beginning of each calendar year to report cases seen in the previous calendar year. If you received a letter of request and report form by mail, please return the report form as soon as possible.

Where should the report be sent?

Forms containing patient information must be sent to the following address:

ALS Registry Coordinator
Massachusetts Department of Public Health
Bureau of Environmental Health
Environmental Epidemiology Program
250 Washington Street. 7th Floor
Boston, MA 02108

Facilities and neurologists reporting no cases may fax the Report Form to 617-624-5778.

Special Notes:

  • MDPH requires the identification of newly diagnosed and previously diagnosed cases of ALS. 
  • Practice Managers: If you are reporting on behalf of the entire department or group, please include a list of neurologists in your department or practice.
  • MDPH occasionally requires case information from long term care facilities. If you have been contacted with a request for patient information and have questions about the request, please contact us at 617-624-5757 or Massachusetts-ALS-Registry@state.ma.us.

This information is provided by the Bureau of Environmental Health within the Department of Public Health.