New YorkA 78452025-2026 Regular SessionHouseWALLET

Relates to establishing a state amyotrophic lateral sclerosis (ALS) and motor neuron disease (MND) registry

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Bill Overview

Analyzed Economic Effects

3 provisions identified: 2 benefits, 0 costs, 1 mixed.

Privacy rules for ALS/MND registry data

The Health Department keeps ALS/MND registry records confidential. Only Department staff and approved researchers with a valid scientific or public health purpose can see identified records. The Department logs who accessed a record, who approved it, when, and why.

State ALS/MND registry and public data

The Health Department runs a statewide registry to track ALS and other motor neuron diseases. It can share only de-identified, summary, or aggregate data with the CDC, local health officers, or researchers. By January 1, 2027, it maintains a public website with state, county, and demographic data while protecting privacy. The Commissioner sets forms, allowed uses, and privacy rules, including de-identification.

Doctors report ALS/MND; patients can opt out

Doctors, nurse practitioners, physician assistants, and hospitals must report each ALS or MND case to the Health Department within 45 days, using a state form. Patients get written and verbal notice about this data collection. You can opt out by sending a written opt-out after you review the notice.

Sponsors & Cosponsors

Sponsor

Steve Stern
Democratic • House

Cosponsors

Harvey Epstein
Democratic • House
MaryJane Shimsky
Democratic • House
Micah Lasher
Democratic • House
Nader Sayegh
Democratic • House
Rebecca Seawright
Democratic • House
Steven Otis
Democratic • House

Roll Call Votes

All Roll Calls

Yes: 58 • No: 0

House vote • 6/10/2025

FLOOR Vote