New York S 6413: Relates to establishing a state amyotrophic lateral sclerosis (ALS) and motor neuron disease (MND) registry

Bill Text

Bill Search and Legislative Information | New York State Assembly 

• 

• 

• 

• 

• 

• 

• 

• 

 Skip to main content 

 New York State Assembly

 Speaker Carl E. Heastie

 --> 
 --> 

 --> 

• 
 Assembly Members 

• 
 Legislative Info 

• 
 Public Hearings 

• 
 Speaker's Press 

• 
 Assembly Reports 

• 
 Committees & More 

• Bill Search Home
• Laws
• Legislative Calendar
• Public Hearing Schedule
• Assembly Calendars
• Assembly Committee Agenda 

 Javascript must be enabled to properly view this page. 

 - This bill is not active in this session.

 Bill No.: 

• Summary 
• Actions 
• Committee&nbspVotes 
• Floor&nbspVotes 
• Memo 
• Text 
• LFIN 
• Chamber&nbspVideo/Transcript 
S06413 Summary:

BILL NOS06413 

&nbsp

SAME ASSAME AS A07845

&nbsp

SPONSORSCARCELLA-SPANTON

&nbsp

COSPNSRFAHY

&nbsp

MLTSPNSR

&nbsp

Add Art 20-C §§2020 - 2024, Pub Health L

&nbsp

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.

Go to top S06413 Actions:

BILL NOS06413 

&nbsp

03/13/2025REFERRED TO HEALTH

05/28/2025REPORTED AND COMMITTED TO FINANCE

06/04/2025COMMITTEE DISCHARGED AND COMMITTED TO RULES

06/04/2025ORDERED TO THIRD READING CAL.1540

06/10/2025SUBSTITUTED BY A7845

&nbspA07845 AMEND= Stern

&nbsp04/11/2025referred to health

&nbsp05/19/2025reported referred to codes

&nbsp05/28/2025reported referred to ways and means

&nbsp05/29/2025reported referred to rules

&nbsp06/06/2025reported 

&nbsp06/06/2025rules report cal.455

&nbsp06/06/2025ordered to third reading rules cal.455

&nbsp06/06/2025passed assembly

&nbsp06/06/2025delivered to senate

&nbsp06/06/2025REFERRED TO RULES

&nbsp06/10/2025SUBSTITUTED FOR S6413

&nbsp06/10/20253RD READING CAL.1540

&nbsp06/10/2025PASSED SENATE

&nbsp06/10/2025RETURNED TO ASSEMBLY

&nbsp10/09/2025delivered to governor

&nbsp10/17/2025signed chap.478

Go to topS06413 Committee&nbspVotes:

Go to topS06413 Floor&nbspVotes:

There are no Assembly votes for this bill in this legislative session.

Go to topS06413 Text:

 STATE OF NEW YORK
 ________________________________________________________________________

 6413

 2025-2026 Regular Sessions

 IN SENATE

 March 13, 2025
 ___________

 Introduced by Sen. SCARCELLA-SPANTON -- read twice and ordered printed,
 and when printed to be committed to the Committee on Health

 AN ACT to amend the public health law, in relation to establishing a
 state amyotrophic lateral sclerosis (ALS) and motor neuron disease
 (MND) registry

 The People of the State of New York, represented in Senate and Assem-
 bly, do enact as follows:

 1 Section 1. The public health law is amended by adding a new article
 2 20-C to read as follows:

 3 ARTICLE 20-C
 4 STATE AMYOTROPHIC LATERAL SCLEROSIS AND MOTOR NEURON DISEASE
 5 REGISTRY

 6 Section 2020. Definitions.
 7 2021. Duty to report.
 8 2022. Establishment of registry.
 9 2023. Duties of the department.
 10 2024. Duties of the commissioner.
 11 § 2020. Definitions. As used in this article, the following terms
 12 shall have the following meanings:
 13 1. "ALS" means amyotrophic lateral sclerosis, a neurological disorder
 14 that affects motor neurons, the nerve cells in the brain and spinal cord
 15 that control voluntary muscle movement and breathing.
 16 2. "MND" means motor neuron disease, a group of progressive neurologi-
 17 cal disorders that destroy motor neurons, the cells that control skele-
 18 tal muscle activity such as walking, breathing, speaking, and swallow-
 19 ing. This group includes diseases such as amyotrophic lateral
 20 sclerosis, progressive bulbar palsy, primary lateral sclerosis, progres-
 21 sive muscular atrophy, spinal muscular atrophy, Kennedy's disease, and
 22 post-polio syndrome.

 EXPLANATION--Matter in italics (underscored) is new; matter in brackets
 [ ] is old law to be omitted.
 LBD10901-01-5

 S. 6413 2

 1 § 2021. Duty to report. 1. Every physician, nurse practitioner, physi-
 2 cian assistant and general hospital that diagnoses or is treating a
 3 patient diagnosed with ALS or MND shall give notice no later than one
 4 hundred eighty days of each case of ALS or MND coming under their care,
 5 to the department, in a format to be determined by the commissioner,
 6 except as otherwise provided in this article.
 7 2. All patients diagnosed wit