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NY S06413
Bill
Status
3/13/2025
Primary Sponsor
Jessica Scarcella-Spanton
Click for details
AI Summary
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Establishes a state registry for collecting information on the 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 a patient 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 will still be recorded for patients who decline to participate
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Department must create a public website by January 1, 2027 displaying ALS and MND incidence and prevalence data by county along with demographic information on affected patients
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All patient information remains confidential and may only be shared with the CDC, local health officers, or qualified 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
SUBSTITUTED BY A7845
6/10/2025