Sponsored by:
Senator VIN GOPAL
District 11 (Monmouth)
Senator TROY SINGLETON
District 7 (Burlington)
Co-Sponsored by:
Senators Diegnan, Amato, McKnight, Greenstein and Zwicker
SYNOPSIS
Requires health care professionals to report cases of amyotrophic lateral sclerosis and motor neuron disease.
CURRENT VERSION OF TEXT
As reported by the Senate Health, Human Services and Senior Citizens Committee on June 9, 2025, with amendments.
An Act concerning amyotrophic lateral sclerosis 1and motor neuron disease1 and supplementing Title 26 of the Revised Statutes.
Be It Enacted by the Senate and General Assembly of the State of New Jersey:
1. a. As used in this section:
“Amyotrophic lateral sclerosis” means a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord.
"Health care professional" means a person licensed to practice a health care profession pursuant to Title 45 of the Revised Statutes.
1"Motor neuron disease" means 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.1
b. (1) Consistent with federal and State privacy laws, the Department of Health shall require health care professionals, who screen for, diagnose, or provide therapeutic services to patients with amyotrophic lateral sclerosis 1or motor neuron disease1, to confidentially report to the1[ department] New Jersey State Health Assessment Data System1 all known cases of amyotrophic lateral sclerosis 1and motor neuron disease1 in a manner to be specified by the department 1no later than six months following a patient’s amyotrophic lateral sclerosis or motor neuron disease diagnosis1.
(2) Any information reported to the 1[department] New Jersey State Health Assessment Data System1 pursuant to this subsection shall be reported in a manner to protect against the disclosure of any confidential or personal identifying information of any patient or health care professional.
(3) The 1[Commissioner of Health may 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, provided that access to data under the agreements is consistent with the privacy, security, and disclosure protections under this act. In the case of researchers, the commissioner shall first obtain evidence of the approval of the researcher’s academic committee for the protection of human subjects established in accordance with the provisions of 45 C.F.R. Part 46. The commissioner shall disclose the minimum amount of information necessary to accomplish a specified research purpose] department may enter into agreements to provide the data reported to the New Jersey State Health Assessment Data System pursuant to this subsection 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 to 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 pursuant to this paragraph shall be reported in a manner to protect against the disclosure of any confidential or personal identifying information of any patient or health care professional1.
c. The 1[department] New Jersey State Health Assessment Data System1 shall record and compile information received pursuant to this section for research and statistical purposes only.
d. Nothing in this act shall be construed to authorize the disclosure of any confidential or personal identifying information.
e. No later than 12 months following the effective date of this act, the Commissioner of Health shall develop and make available on its Internet website written, educational materials that provide information about the 1[National Amyotrophic Lateral Sclerosis Registry] New Jersey State Health Assessment Data System1, including:
1[(1) information on how to participate in the National Amyotrophic Lateral Sclerosis Registry and resources for assistance with the registration process;
(2) information regarding the eligibility requirements for participation in the National Amyotrophic Lateral Sclerosis Registry; and
(3) contact information for the National Amyotrophic Lateral Sclerosis Registry and for local and national research entities investigating the causes of amyotrophic lateral sclerosis] 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 subsection b. of this section1.
2. The Department of Health, in consultation with the Public Health Council, shall adopt rules and regulations, pursuant to the "Administrative Procedure Act," P.L.1968, c.410 (C.52:14B-1 et seq.), as are necessary to effectuate the purposes of this act.
3. This act shall take effect immediately.