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New YorkA 78452025-2026 Regular SessionHouse

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

Sponsored By: Steve Stern (Democratic)

Signed by Governor

HEALTHCODESWAYS AND MEANSRULES

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Bill Overview

Analyzed Economic Effects

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

Registry notice and privacy rights for patients

Patients diagnosed with ALS or another motor neuron disease must receive written and spoken notice about registry data collection. After enough time to review it, patients can opt out in writing; only their disease-case incidence information remains required. The department must protect patient identities, allowing access only for administration or approved demographic, disease-pattern, or similar public-health studies. Access requires authorized department staff or qualified participants with a valid scientific interest; data shared with the CDC, local health officers, or health researchers must not identify patients. The department must log who approved access, who received it, dates, and purposes; confidentiality violations or misuse can end access.

New York tracks motor neuron disease cases

New York’s health department must create a research registry tracking new and existing cases of ALS and other motor neuron diseases. Doctors, nurse practitioners, physician assistants, and general hospitals must report cases within 180 days after patients come under their care. Patients have no reporting duty. By January 1, 2027, the department must maintain a public website showing cases by county and affected patients’ demographic information. The department may consult experts, patients, researchers, and clinicians about what data to collect. The act takes effect 90 days after enactment, with immediate authority to issue rules on reporting, data use, and privacy.

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: 197 • No: 0

Senate vote • 6/10/2025

FLOOR Vote

Yes: 58 • No: 0

House vote • 6/6/2025

Assembly floor vote

Yes: 139 • No: 0

Actions Timeline

  1. SIGNED CHAP.478

    10/17/2025House

  2. DELIVERED TO GOVERNOR

    10/9/2025House

  3. RETURNED TO ASSEMBLY

    6/10/2025Senate

  4. PASSED SENATE

    6/10/2025Senate

  5. 3RD READING CAL.1540

    6/10/2025Senate

  6. SUBSTITUTED FOR S6413

    6/10/2025Senate

  7. REFERRED TO RULES

    6/6/2025Senate

  8. DELIVERED TO SENATE

    6/6/2025House

  9. PASSED ASSEMBLY

    6/6/2025House

  10. ORDERED TO THIRD READING RULES CAL.455

    6/6/2025House

  11. RULES REPORT CAL.455

    6/6/2025House

  12. REPORTED

    6/6/2025House

  13. REPORTED REFERRED TO RULES

    5/29/2025House

  14. REPORTED REFERRED TO WAYS AND MEANS

    5/28/2025House

  15. REPORTED REFERRED TO CODES

    5/19/2025House

  16. REFERRED TO HEALTH

    4/11/2025House

Bill Text

  • Original

    4/11/2025

    PDF

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