Massachusetts ALS Registry Data

Case Ascertainment Overview

The MA ALS Registry aims to identify all eligible cases of ALS in Massachusetts on an annual basis.  The eligibility criteria include residence in Massachusetts and a diagnosis of or treatment for ALS during a calendar year.  State regulations require Massachusetts medical professionals to report ALS patients to MDPH upon request.  The privacy of all information collected for the Registry is protected by law.  No patients are contacted by the Registry.

Patients do not self-register.  All patients are reported by hospitals, clinics, and neurologists (primary sources). To be certain no patients are missed, patients are also identified from secondary sources that include ALS patient advocacy organizations, hospices, nursing homes, and death certificates.

Public health nurses, trained by consulting Registry neurologists, obtain and abstract records of the reported patients. The Registry receives an average of 600 reports annually on patients with a diagnosis of ALS.  A one page abstract form is used to record all necessary clinical and demographic information from each medical record. These are first reviewed for eligibility.  Clinical information is then reviewed for eligible patients and diagnoses are classified by a consulting neurologist in accordance with the revised, standardized El Escorial World Federation of Neurology Criteria for the Diagnosis of ALS.

Case Ascertainment and Verification Flow Chart

ALS registry flow chart

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