Michigan’s mandated ALS patient registry remains stuck in pilot phase

Fifteen months after a state mandate took effect requiring doctors to report ALS diagnoses, Michigan still has no fully operational registry to track the disease. The reporting rule took effect in May 2025, with the state promising it would improve monitoring of ALS cases.

A state health department spokesperson said the tracking system remains in a test pilot phase, with officials still working out basic implementation questions, including whether the government needs to contact patients directly. Only one of the state's four specialized ALS clinics, at the University of Michigan, has begun entering cases into the pilot system, doing so starting July 2. Two other clinics have orientations scheduled this month, and the state was still trying to reach the fourth.

Doctors diagnose about 200 new ALS cases in Michigan each year, and the state has one of the nation's highest ALS rates. Neurologist Dr. Amit Sachdev of MSU Health Care said reliable registry data is needed to identify clusters and ask whether regional or population factors are driving case numbers. Vermont, which has the nation's highest ALS rate, began tracking cases in 2023 under a similar reporting law and is now sharing implementation practices with Michigan and three other states.

Patients and caregivers say the delay has been frustrating. Cathy Smith, a former teacher living with ALS, and her husband Greg Smith, her full-time caregiver, said they want to know why data collection has not started and when it will begin.

Read the full story at wilx.com.