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NY A07845
Bill
Status
10/17/2025
Primary Sponsor
Steve Stern
Click for details
AI Summary
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Establishes a state registry for tracking incidence and prevalence of amyotrophic lateral sclerosis (ALS) and motor neuron diseases (MND), including progressive bulbar palsy, primary lateral sclerosis, spinal muscular atrophy, Kennedy's disease, and post-polio syndrome
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Requires physicians, nurse practitioners, physician assistants, and general hospitals to report ALS and MND cases to the Department of Health within 180 days of diagnosis or coming under their care
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Patients must receive written and verbal notice about data collection and may opt out in writing, though basic incidence data (that a case exists) will still be recorded regardless of opt-out status
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Department must create a public website called the "New York State ALS and MND Disease Registry" by January 1, 2027, displaying incidence, prevalence, and demographic information by county
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All patient information remains confidential and may only be shared with the CDC, local health officers, or qualified health researchers in de-identified, aggregate form that prevents individual identification
Legislative Description
Requires the department of health to establish a registry for the collection of information on the incidence and prevalence of amyotrophic lateral sclerosis (ALS) and motor neuron disease (MND) in the state; requires that every physician, nurse practitioner, physician assistant and general hospital that diagnoses or treats a patient diagnosed with ALS or MND give notice to the department of cases of ALS or MND coming under their care; requires that patients diagnosed with ALS or MND be provided with written and verbal notice regarding the collection of information and patient data on ALS and MND and provides a method for patients to opt out of the collection of data; provides for duties of the department and the commissioner of health in relation thereto.
Last Action
signed chap.478
10/17/2025