Report cases of ALS to the MA ALS Registry

Who should report:

All neurologists, hospitals, neurology clinics, and ALS multidisciplinary centers in Massachusetts must report patients to DPH. This follows DPH regulations on reportable diseases. If you received a letter of request and report form by mail, DPH requires your response. If there are no cases to be reported, completion and submission of the report form is still requested to help us ensure complete case capture.

DPH 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 to conduct accurate and complete surveillance.

Can patients “self-report” their case to the Massachusetts Registry?

Only cases reported by medical professionals are included in the state registry. Patients who wish to ensure reporting of their case should encourage their physicians to report. All neurologists statewide have been contacted about the necessary paperwork for reporting. For additional information, your physician can contact DPH and ask for the ALS Registry Coordinator.

Reporting requirements for health care professionals and facilities

DPH requires the reporting of cases on an annual basis. All neurologists, hospitals, neurology clinics, and ALS multidisciplinary centers throughout the state are contacted at the beginning of each calendar year to report cases seen in the previous calendar year, providing the patient’s name, date of birth, and medical record number. If you received a letter of request and report form by mail, please return the report form as soon as possible.

DPH staff collect extra clinical information through a scheduled office visit. DPH personnel are authorized to collect medical records and other identifiable information from health care providers, as well as from other persons, as required by 105 CMR 300.192, to classify the diagnosis according to El Escorial criteria.

Special Notes:

• DPH 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
• DPH 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.