MDHHS ALS Reporting Requirement Kicks In

The Michigan Department Of Health And Human Services' (MDHHS) Bureau Of Epidemiology and Population Health Lifecourse Epidemiology and Genomics Division has begun to enforce its May 15th Rule 330 that health professionals and health facilities must provide Amyotrophic Lateral Sclerosis (ALS, Lou Gehrig's Disease) "case abstraction forms” to report required information on individuals with ALS and conditions related to ALS:

https://www.michigan.gov/mdhhs/inside-mdhhs/newsroom/2025/06/03/als-reporting

https://ars.apps.lara.state.mi.us/Transaction/DownloadFile?FileName=FinalRule%28s%29.pdf&FileType=FinalRule&TransactionID=1372&EffectiveDate=5%2F15%2F2025&ReturnHTML=True

MDHHS establishes mandatory reporting rule for ALS cases
By Lynn Sutfin - June 03, 2025

LANSING, Mich. – The Michigan Department of Health and Human Services (MDHHS) has announced the adoption of a new administrative rule requiring mandatory reporting of Amyotrophic Lateral Sclerosis (ALS) cases. ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. It currently has no cure, and slowly impacts diagnosed individuals’ ability to move, speak, eat and breathe.

The rule went into effect Thursday, May 15, making Michigan the fifth state in the U.S. to implement mandatory ALS case reporting, which will improve the state’s ability to monitor the disease.

“There are between 4,000 and 6,000 cases of ALS diagnosed across the country annually,” said Dr. Natasha Bagdasarian, chief medical executive. “Mandatory reporting will help provide a better picture of who gets ALS and identify risk factors for the disease. This information will assist with research and could help offer a better future for those with ALS.”

“Establishing ALS as a reportable disease is a critical step toward reducing the burden of ALS in the state of Michigan,” said Dr. Stephen Goutman, Michigan Medicine Pranger ALS Clinic director. “Without a registry, we do not know the rates of ALS in the state or whether these rates are changing. Given the projected increase in ALS by 2030, it is essential that we collect this information now to inform changing disease trends, identify disease clusters and optimize the availability of care for all persons living with ALS.”

Under the new rule, health care professionals and health care facilities that diagnose and treat individuals with ALS will be required to report cases to MDHHS. These reports will help the department continue to develop a comprehensive registry of chronic diseases and contribute to the broader understanding of chronic disease trends in Michigan.

The rule allows public health officials to track the number of ALS cases and where they occur, offering important insight into the incidence and distribution of the disease across Michigan. Statewide ALS reporting will support trend analysis and epidemiologic understanding that can guide future research and public health actions.

“We applaud the State of Michigan and the Michigan Department of Health and Human Services for approving the creation of an ALS registry for the state,” said Dr. Eva L. Feldman, Michigan Medicine ALS Center of Excellence director. “We will now be the fifth state in the United States to have such a registry, pivotal in our fight against ALS. Michigan has one of the highest rates of ALS in the country, and this registry will help in our quest to solve why.”

The ALS reporting rule is available online. For questions about the rule or how chronic diseases, including ALS, are tracked in Michigan, contact MDHHS' Chronic Disease Surveillance Team at MDHHS-Chronicle@Michigan.gov.