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

S T A T E   O F   N E W   Y O R K
 ________________________________________________________________________
 
                                   7845
 
                        2025-2026 Regular Sessions
 
                           I N  A S S E M B L Y
 
                              April 11, 2025
                                ___________
 
 Introduced  by M. of A. STERN -- read once and referred 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:
 
   Section  1.  The  public health law is amended by adding a new article
 20-C to read as follows:
 
                               ARTICLE 20-C
       STATE AMYOTROPHIC LATERAL SCLEROSIS AND MOTOR NEURON DISEASE
                                 REGISTRY
 
 SECTION 2020. DEFINITIONS.
         2021. DUTY TO REPORT.
         2022. ESTABLISHMENT OF REGISTRY.
         2023. DUTIES OF THE DEPARTMENT.
         2024. DUTIES OF THE COMMISSIONER.
   § 2020. DEFINITIONS. AS USED IN  THIS  ARTICLE,  THE  FOLLOWING  TERMS
 SHALL HAVE THE FOLLOWING MEANINGS:
   1.  "ALS" MEANS AMYOTROPHIC LATERAL SCLEROSIS, A NEUROLOGICAL DISORDER
 THAT AFFECTS MOTOR NEURONS, THE NERVE CELLS IN THE BRAIN AND SPINAL CORD
 THAT CONTROL VOLUNTARY MUSCLE MOVEMENT AND BREATHING.
   2. "MND" MEANS MOTOR NEURON DISEASE, A GROUP OF PROGRESSIVE NEUROLOGI-
 CAL DISORDERS THAT DESTROY MOTOR NEURONS, THE CELLS THAT CONTROL  SKELE-
 TAL  MUSCLE  ACTIVITY SUCH AS WALKING, BREATHING, SPEAKING, AND SWALLOW-
 ING.    THIS  GROUP  INCLUDES  DISEASES  SUCH  AS  AMYOTROPHIC   LATERAL
 SCLEROSIS, PROGRESSIVE BULBAR PALSY, PRIMARY LATERAL SCLEROSIS, PROGRES-
 SIVE  MUSCULAR  ATROPHY, SPINAL MUSCULAR ATROPHY, KENNEDY'S DISEASE, AND
 POST-POLIO SYNDROME.
 
  EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets
                       [ ] is old law to be omitted.
                                                            LBD10901-01-5
 A. 7845                             2
 
   § 2021. DUTY TO REPORT. 1. EVERY PHYSICIAN, NURSE PRACTITIONER, PHYSI-
 CIAN ASSISTANT AND GENERAL HOSPITAL THAT  DIAGNOSES  OR  IS  TREATING  A
 PATIENT  DIAGNOSED  WITH  ALS OR MND SHALL GIVE NOTICE NO LATER THAN ONE
 HUNDRED EIGHTY DAYS OF EACH CASE OF ALS OR MND COMING UNDER THEIR  CARE,
 TO  THE  DEPARTMENT,  IN  A FORMAT TO BE DETERMINED BY THE COMMISSIONER,
 EXCEPT AS OTHERWISE PROVIDED IN THIS ARTICLE.
   2. ALL PATIENTS DIAGNOSED WITH ALS OR MND SHALL BE PROVIDED WITH WRIT-
 TEN AND VERBAL  NOTICE  REGARDING  THE  COLLECTION  OF  INFORMATION  AND
 PATIENT  DATA ON ALS AND MND. PATIENTS WHO DO NOT WISH TO PARTICIPATE IN
 THE COLLECTION OF DATA SHALL AFFIRMATIVELY  OPT  OUT  IN  WRITING  AFTER
 AMPLE  OPPORTUNITY  TO  REVIEW SUCH NOTICE, PROVIDED THAT THE MERE INCI-
 DENCE OF A PATIENT WITH ALS OR MND SHALL BE THE SOLE  REQUIRED  INFORMA-
 TION  FOR  THE  REGISTRY  UNDER  SECTION TWO THOUSAND TWENTY-TWO OF THIS
 ARTICLE FOR ANY PATIENT WHO CHOOSES NOT TO PARTICIPATE.
   § 2022. ESTABLISHMENT OF REGISTRY. 1. THE DEPARTMENT  SHALL  ESTABLISH
 AN  ALS  AND MND REGISTRY FOR THE COLLECTION OF INFORMATION ON THE INCI-
 DENCE AND PREVALENCE OF ALS AND MND. THE DEPARTMENT MAY CONSULT WITH ALS
 AND MND EXPERTS, INCLUDING NEUROLOGISTS, PATIENTS LIVING  WITH  ALS  AND
 MND, AND ALS AND MND RESEARCHERS TO ASSIST IN THE DEVELOPMENT AND IMPLE-
 MENTATION  OF  SUCH  REGISTRY,  AND  TO  DETERMINE  WHAT  DATA  SHALL BE
 COLLECTED.
   2. ALL INFORMATION MAINTAINED BY THE DEPARTMENT UNDER  THE  PROVISIONS
 OF  THIS  SECTION SHALL BE CONFIDENTIAL EXCEPT AS NECESSARY TO CARRY OUT
 THE PROVISIONS OF THIS SECTION AND SHALL NOT BE RELEASED FOR  ANY  OTHER
 PURPOSE.
   3.  THE  DEPARTMENT  MAY  ENTER  INTO  AN  AGREEMENT  TO  PROVIDE DATA
 COLLECTED IN THE ALS AND MND REGISTRY TO THE FEDERAL CENTERS FOR DISEASE
 CONTROL AND PREVENTION, OR SUCCESSOR AGENCY, TO LOCAL  HEALTH  OFFICERS,
 OR HEALTH RESEARCHERS FOR THE STUDY OF ALS AND MND FOR PUBLIC HEALTH AND
 RESEARCH  PURPOSES.  DATA  SHALL  BE  PROVIDED  IN SUMMARY, STATISTICAL,
 AGGREGATE, OR OTHER FORM SUCH THAT NO INDIVIDUAL PERSON CAN  BE  IDENTI-
 FIED.
   4.  ON OR BEFORE JANUARY FIRST, TWO THOUSAND TWENTY-SEVEN, THE DEPART-
 MENT SHALL CREATE AND MAINTAIN A PUBLIC WEBSITE  CALLED  THE  "NEW  YORK
 STATE  ALS  AND  MN DISEASE REGISTRY" WHICH SHALL INCLUDE INFORMATION ON
 THE INCIDENCE AND PREVALENCE OF ALS AND MND IN THE STATE BY COUNTY,  AND
 DEMOGRAPHIC INFORMATION ON AFFECTED PATIENTS.
   §  2023.  DUTIES  OF  THE  DEPARTMENT. 1. ALS AND MND REPORTS AND DATA
 SHALL BE MAINTAINED BY THE DEPARTMENT IN A MANNER SUITABLE FOR  RESEARCH
 PURPOSES  AND  SHALL BE MADE AVAILABLE TO PEOPLE AS SET FORTH IN SECTION
 TWO THOUSAND TWENTY-TWO OF THIS ARTICLE.
   2. ALL INFORMATION COLLECTION UNDER THIS ARTICLE SHALL BE CONFIDENTIAL
 INSOFAR AS THE IDENTITY OF INDIVIDUAL PATIENTS IS CONCERNED AND SHALL BE
 USED SOLELY FOR THE PURPOSES AS PROVIDED IN THIS ARTICLE. ACCESS TO SUCH
 INFORMATION SHALL BE LIMITED TO AUTHORIZED EMPLOYEES OF  THE  DEPARTMENT
 AS  WELL AS PERSONS AND ORGANIZATIONS IDENTIFIED IN SECTION TWO THOUSAND
 TWENTY-TWO OF THIS ARTICLE WITH VALID SCIENTIFIC INTEREST AND QUALIFICA-
 TIONS, AS DETERMINED BY THE COMMISSIONER, WHO ARE ENGAGED IN  DEMOGRAPH-
 IC, EPIDEMIOLOGICAL, OR OTHER SIMILAR STUDIES RELATED TO PUBLIC HEALTH.
   3.  THE DEPARTMENT SHALL MAINTAIN AN ACCURATE RECORD OF ALL PEOPLE WHO
 ARE GIVEN ACCESS TO THE INFORMATION CONTAINED IN THE ALS AND MND  REGIS-
 TRY.  SUCH  A  RECORD  SHALL  INCLUDE THE NAME OF THE PERSON AUTHORIZING
 ACCESS, THE NAME, TITLE AND ORGANIZATIONAL AFFILIATION OF PERSONS  GIVEN
 ACCESS, DATES OF ACCESS, AND THE SPECIFIC PURPOSES FOR WHICH INFORMATION
 IS TO BE USED.
 A. 7845                             3
 
   4.  ANY  PERSON  WHO,  IN VIOLATION OF A WRITTEN AGREEMENT TO MAINTAIN
 CONFIDENTIALITY, DISCLOSES ANY INFORMATION PROVIDED UNDER THIS  ARTICLE,
 OR  WHO  USES  INFORMATION PROVIDED UNDER THIS ARTICLE IN A MANNER OTHER
 THAN THAT PRESCRIBED BY THE COMMISSIONER, MAY BE DENIED  FURTHER  ACCESS
 TO ANY CONFIDENTIAL INFORMATION MAINTAINED BY THE DEPARTMENT.
   §  2024.  DUTIES  OF THE COMMISSIONER. THE COMMISSIONER MAY PROMULGATE
 ANY REGULATIONS NECESSARY TO IMPLEMENT THE PROVISIONS OF  THIS  ARTICLE,
 INCLUDING BUT NOT LIMITED TO:
   1. ESTABLISHING THE FORM, CONTENT, AND MANNER BY WHICH PROVIDERS SHALL
 REPORT  ALS  AND  MND  INFORMATION  INTO  THE REGISTRY ESTABLISHED UNDER
 SECTION TWO THOUSAND TWENTY-TWO OF THIS ARTICLE;
   2. PRESCRIBING THE PERMISSIBLE USES FOR THE INFORMATION MADE AVAILABLE
 UNDER THIS ARTICLE; AND
   3. ESTABLISHING PROCEDURES TO MAINTAIN CONFIDENTIALITY OF  INFORMATION
 COLLECTED  BY PROVIDERS AND PROVIDED TO MEMBERS OF THE DEPARTMENT PURSU-
 ANT TO THIS ARTICLE. THIS SHALL  INCLUDE  A  PROCEDURE  TO  ENSURE  THAT
 CONFIDENTIAL PATIENT INFORMATION IS DEIDENTIFIED PRIOR TO BEING PROVIDED
 TO AUTHORIZED PARTICIPANTS UNDER THIS ARTICLE.
   §  2.  This  act shall take effect on the ninetieth day after it shall
 have become a law. Effective immediately, the addition, amendment and/or
 repeal of any rule or regulation necessary  for  the  implementation  of
 this  act  on its effective date are authorized to be made and completed
 on or before such effective date.