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Amyotrophic Lateral Sclerosis

Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s disease, is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. The main symptom is muscle weakness throughout the body, which leads to the loss of a person’s ability to move, speak, eat and breathe. Currently the only known cause of ALS is inherited or passed down in a family through their genes, which is called familial ALS. Researchers are currently looking for other causes including environmental, occupational and lifestyle exposures. There is currently no cure, and most individuals die within 3 to 5 years of diagnosis. 

Michigan adopted an administrative rule, requiring mandatory reporting of ALS cases. This makes Michigan the 5th state to implement mandatory ALS reporting. Under this rule, all health care professionals are to report confirmed cases of ALS to MDHHS within 3 months of diagnosis.

 

How to report

If you are a clinician who has had an ALS registry orientation and need to report a case use the links below:

 

-Required information to be reported within 3 months of diagnosis
Click Here

 

-Additional information to be reported within 6 months of MDHHS request
Click Here

 

If you are a clinician who has an ALS case to report and has not had an ALS registry orientation, please contact us at MDHHS-ALS@michigan.gov to set up a time.

If you are looking for more information about the ALS Registry that you do not see here, or if you need accessibility assistance reading any of the documents on this webpage, please contact us below.

 

Contact us:
MDHHS-ALS@michigan.gov