New York requires the Department of Health to establish a registry for tracking amyotrophic lateral sclerosis (ALS) and motor neuron disease (MND).

The bill mandates the New York Department of Health to create a registry for collecting data on the incidence and prevalence of ALS and MND. Healthcare providers must report cases of ALS or MND to the department within 180 days. Patients diagnosed with these conditions must be informed about the data collection and given the option to opt out. The department must maintain a public website with registry data by January 2027. The registry data will be used for research and public health purposes, with strict confidentiality measures in place.

New York requires the Department of Health to establish a registry for tracking amyotrophic lateral sclerosis (ALS) and motor neuron disease (MND).

The bill mandates the New York Department of Health to create a registry for collecting data on the incidence and prevalence of ALS and MND. Healthcare providers must report cases of ALS or MND to the department within 180 days. Patients diagnosed with these conditions must be informed about the data collection and given the option to opt out. The department must maintain a public website with registry data by January 2027. The registry data will be used for research and public health purposes, with strict confidentiality measures in place.