Bill > A07845

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 progressive neurological disorders that affect nerve cells controlling muscle movement. Under the bill, every physician, nurse practitioner, physician assistant, and general hospital must report new ALS and MND diagnoses to the department within 180 days, with patients being informed about the data collection and given the option to opt out. The registry will track the incidence and prevalence of these diseases across the state, collecting basic information about patients while maintaining strict confidentiality. The department is authorized to consult with medical experts, patients, and researchers to develop the registry and may share anonymized, aggregate data with federal agencies, local health officers, and researchers for public health and research purposes. By January 2027, the department must create a public website displaying the registry's information, including county-level prevalence and patient demographic data. The bill includes detailed provisions to protect patient privacy, regulate data access, and ensure that confidential information is not improperly disclosed, with potential consequences for unauthorized use of the collected data.

Budget and Finance, Health and Social Services, Housing and Urban Affairs

https://www.nysenate.gov/legislation/bills/2025/A7845