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New YorkS 5982025-2026 Regular SessionSenateWALLET

Establishes a state frontotemporal degeneration registry

Sponsored By: Michelle Hinchey (Democratic)

Became Law

HEALTHWAYS AND MEANS

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Bill Overview

Analyzed Economic Effects

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

Privacy and opt-out for frontotemporal registry

If you are diagnosed with frontotemporal degeneration (FTD), you get written and verbal notice about the registry. You can opt out in writing; then only the fact of your diagnosis is kept. The Department of Health keeps identities confidential and limits access to approved staff and qualified researchers. It may share only deidentified, summary data under agreements. It keeps an access log and can cut off anyone who misuses data.

Public frontotemporal data website by 2027

By January 1, 2027, the Department of Health must run a public website called the New York State frontotemporal degeneration registry. It shows diagnosis rates by county and patient groups. Data is presented so no one can be identified.

State registry for frontotemporal degeneration

The law creates a state registry to track frontotemporal degeneration (FTD) diagnoses. Doctors, nurse practitioners, physician assistants, and hospitals must report each case within 180 days. The Health Commissioner sets the reporting forms, data, and other rules. The Department of Health uses the registry to support public health and research.

Sponsors & Cosponsors

Sponsor

  • Michelle Hinchey

    Democratic • Senate

Cosponsors

  • Jeremy Cooney

    Democratic • Senate

  • Kristen Gonzalez

    Democratic • Senate

  • Michael Gianaris

    Democratic • Senate

  • Patricia Fahy

    Democratic • Senate

  • Robert Jackson

    Democratic • Senate

Roll Call Votes

All Roll Calls

Yes: 97 • No: 0

Senate vote • 5/28/2025

FLOOR Vote

Yes: 61 • No: 0

committee vote • 5/20/2025

Finance Committee Vote

Yes: 22 • No: 0

committee vote • 1/21/2025

Health Committee Vote

Yes: 14 • No: 0

Actions Timeline

  1. SIGNED CHAP.479

    10/16/2025Senate

  2. DELIVERED TO GOVERNOR

    10/9/2025Senate

  3. RETURNED TO SENATE

    6/6/2025House

  4. PASSED ASSEMBLY

    6/6/2025House

  5. ORDERED TO THIRD READING RULES CAL.418

    6/6/2025House

  6. SUBSTITUTED FOR A1985C

    6/6/2025House

  7. REFERRED TO WAYS AND MEANS

    5/28/2025House

  8. DELIVERED TO ASSEMBLY

    5/28/2025Senate

  9. PASSED SENATE

    5/28/2025Senate

  10. ADVANCED TO THIRD READING

    5/22/2025Senate

  11. 2ND REPORT CAL.

    5/21/2025Senate

  12. 1ST REPORT CAL.1210

    5/20/2025Senate

  13. PRINT NUMBER 598B

    4/2/2025Senate

  14. AMEND AND RECOMMIT TO FINANCE

    4/2/2025Senate

  15. PRINT NUMBER 598A

    2/13/2025Senate

  16. AMEND AND RECOMMIT TO FINANCE

    2/13/2025Senate

  17. REPORTED AND COMMITTED TO FINANCE

    1/21/2025Senate

  18. REFERRED TO HEALTH

    1/8/2025Senate

Bill Text

  • Amendment B

    4/2/2025

    PDF

  • Amendment A

    2/13/2025

    PDF

  • Original

    1/2/2025

    PDF

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