Bill > S06413

This bill requires the New York State Department of Health to establish a comprehensive registry for collecting information on amyotrophic lateral sclerosis (ALS) and motor neuron disease (MND), which are neurological disorders that progressively damage nerve cells controlling muscle movement. The bill mandates that every physician, nurse practitioner, physician assistant, and general hospital must report new ALS and MND diagnoses to the department within 180 days, while ensuring patient privacy and consent. Patients will be provided written and verbal notice about data collection and have the option to opt out, with the registry capturing at least the basic incidence of their condition. The department is authorized to consult with medical experts and researchers in developing the registry, and may share anonymized, aggregate data with federal agencies, local health officers, and health researchers for public health studies. By January 2027, the department must create a public website displaying ALS and MND incidence and prevalence information by county and patient demographics. The bill emphasizes strict confidentiality protocols, limiting access to authorized personnel and requiring careful record-keeping of data usage, with potential penalties for unauthorized information disclosure. The registry aims to improve understanding of these neurological conditions and support research efforts.

Budget and Finance, Health and Social Services

https://www.nysenate.gov/legislation/bills/2025/S6413