SENATE HEALTH, HUMAN SERVICES AND SENIOR CITIZENS COMMITTEE

STATEMENT TO

[First Reprint]

ASSEMBLY, No. 2980

STATE OF NEW JERSEY

DATED:  JUNE 9, 2025

      The Senate Health, Human Services and Senior Citizens Committee reports favorably and with committee amendments Assembly Bill No. 2980 (1R).

      As amended by the committee, this bill requires health care professionals to report cases of amyotrophic lateral sclerosis and motor neuron disease.

      The bill, as amended, provides that, consistent with federal and State privacy laws, the Department of Health (department) is to require health care professionals, who screen for, diagnose, or provide therapeutic services to patients with amyotrophic lateral sclerosis or motor neuron disease, to confidentially report to the New Jersey State Health Assessment Data System all known cases of amyotrophic lateral sclerosis and motor neuron disease in a manner to be specified by the department no later than six months after a patient is diagnosed with amyotrophic lateral sclerosis or motor neuron disease.

      Under the bill as amended, any information reported to the New Jersey State Health Assessment Data System is to be reported in a manner to protect against the disclosure of any confidential or personal identifying information of any patient or health care professional.

      As amended by the committee, the department may enter into agreements to provide the data reported to the New Jersey State Health Assessment Data System with the federal Centers for Disease Control and Prevention and any other successor agency, local health officers, or researchers of the study of amyotrophic lateral sclerosis or motor neuron disease for public health and research purposes.  Any data provided pursuant to such agreements is to be reported in a manner to protect against the disclosure of any confidential or personal identifying information of any patient or health care professional.

      As amended, no later than 12 months following the bill’s effective date, the commissioner is to develop and make available on its Internet website written, educational materials that provide information about the Jersey State Health Assessment Data System, including information on how to access the datasets, statistics, and information regarding amyotrophic lateral sclerosis and motor neuron disease reported to the New Jersey State Health Assessment Data System pursuant to the bill.

      As amended and reported by the committee, Assembly Bill No. 2980 (1R) is identical to Senate Bill No. 4030, which was also amended and reported by the committee on this date.

COMMITTEE AMENDMENTS

      The committee amendments add a definition of “motor neuron disease to mean a group of progressive neurological conditions that destroy motor neurons, which are the cells that control skeletal muscle activity such as walking, breathing, speaking, and swallowing; and include amyotrophic lateral sclerosis, progressive bulbar palsy, primary lateral sclerosis, progressive muscular atrophy, spinal muscular atrophy, Kennedy’s disease, and post-polio syndrome.

      The committee amendments remove references to the National Amyotrophic Lateral Sclerosis Registry.

      The committee amendments require health care professionals to confidentially report cases of motor neuron disease in accordance with the provisions of the bill.

      The committee amendments provide that, consistent with federal and State privacy laws, the department is to require health care professionals, who screen for, diagnose, or provide therapeutic services to patients with amyotrophic lateral sclerosis or motor neuron disease,  to confidentially report all known cases of amyotrophic lateral sclerosis and motor neuron disease to the New Jersey State Health Assessment Data System no later than six months following a patient’s diagnosis with amyotrophic lateral sclerosis or motor neuron disease .  As originally provided in the bill, health care professionals who screen for, diagnose, or provide therapeutic services to patients with amyotrophic lateral sclerosis were to confidentially report all known cases of amyotrophic lateral sclerosis to the department.

      The committee amendments require that the information reported to the New Jersey State Health Assessment Data System, instead of the department and the National Amyotrophic Lateral Sclerosis Registry as originally provided in the bill, is to be reported in a manner to protect against the disclosure of any confidential or personal identifying information of any patient or health care professional.

      The committee amendments remove the requirement that the Commissioner of Health enter into data sharing and protection agreements with researchers or State, regional, or national amyotrophic lateral sclerosis registries for bidirectional data exchange for research purposes in accordance with the provisions of the bill.  The committee amendments allow the Department of Health to enter into agreements to provide the data reported to the New Jersey State Health Assessment Data System with the federal Centers for Disease Control and Prevention and any other successor agency, local health officers, or researchers of the study of amyotrophic lateral sclerosis or motor neuron disease for public health and research purposes.

      The committee amendments require that any data provided pursuant to such agreements is to be reported in a manner to protect against the disclosure of any confidential or personal identifying information of any patient or health care professional.

      The committee amendments require the New Jersey State Health Assessment Data System, instead of the department as originally provided in the bill, to record and compile information received pursuant to this section for research and statistical purposes only.

      The committee amendments remove the requirement that the Commissioner of Health develop and make available on its Internet website written, educational materials that provide information about the National Amyotrophic Lateral Sclerosis Registry, as originally provided in the bill.

      The committee amendments require the commissioner to develop and make available on its Internet website written, educational materials that provide information about the New Jersey State Health Assessment Data System, including information on how to access the datasets, statistics, and information regarding amyotrophic lateral sclerosis and motor neuron disease reported to the data system.

      The committee amendments update the title and the synopsis of the bill to reflect the changes made by the committee amendments.