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A 2980

Requires health care professionals to report cases of amyotrophic lateral sclerosis and motor neuron disease.*

2024-2025 Regular Session Introduced by Margie Donlon and 1 co-sponsor

Requires clinicians to report all diagnosed ALS and motor neuron disease cases to the New Jersey State Health Assessment Data System with privacy protections.

Reported out of Senate Committee, 2nd Reading
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Bill Summary · A 2980

Summary — A-2980 (1R/2R): Reporting of ALS and Motor Neuron Disease

Status: Reported out of Senate Budget & Appropriations Committee, 2nd Reading (11/13/2025)
Introduced: January 9, 2024
Primary Sponsor: Assemblywoman Tennille R. McCoy (D-14); Co-sponsor: Margie Donlon
Companion: S4030

Purpose

Require systematic, confidential reporting of diagnosed cases of amyotrophic lateral sclerosis (ALS) and, as amended, broader motor neuron disease (MND) to a State data system to support public health monitoring and research while protecting patient privacy.

Key provisions

  • Who must report
    • Health care professionals who screen for, diagnose, or provide therapeutic services to patients with ALS or MND (the bill removed a requirement on facilities in later amendments).
  • What to report
    • All known (not suspected) diagnosed cases of ALS and, under later amendments, MND.
  • Where to report
    • To the New Jersey State Health Assessment Data System (replacing earlier language directing reports to the Department or the National ALS Registry).
  • When to report
    • In a manner specified by the Department of Health, no later than six months after a patient’s diagnosis.
  • Data protections and confidentiality
    • Reporting and any data sharing must be consistent with federal and State privacy laws and be done to protect against the disclosure of personal identifying information.
    • The department must limit disclosures to the minimum information necessary for specific research purposes.
    • For researcher access, the Commissioner must obtain evidence of institutional review/approval consistent with 45 C.F.R. Part 46 (human subjects protections).
  • Permitted data sharing
    • The Department may enter agreements to provide system data to the CDC (and successor federal agency), local health officers, and researchers studying ALS/MND for public health and research purposes. Data shared must preserve confidentiality.
  • Use of data
    • The State Health Assessment Data System will record and compile information for research and statistical/public-health purposes only.
  • Outreach and education
    • Within 12 months of the bill’s effective date, the Commissioner must publish written educational materials on the Department website explaining the data system, how to access datasets/statistics, and information regarding ALS/MND reported to the system.
  • Rules
    • The bill requires adoption of implementing rules and regulations.

Definitions (committee amendments)

  • “Motor neuron disease” is defined broadly to include a group of progressive neurological conditions that destroy motor neurons, explicitly listing conditions such as ALS, progressive bulbar palsy, primary lateral sclerosis, progressive muscular atrophy, spinal muscular atrophy, Kennedy’s disease, and post-polio syndrome.

Impact and considerations

  • Improves New Jersey’s ability to monitor ALS/MND incidence and support research and public-health planning.
  • Establishes a mandatory reporting obligation on clinicians with built-in privacy protections and limits on data disclosure.
  • No fiscal note has been certified; potential administrative costs for implementing reporting rules, data system use, and educational materials may exist.
  • The measure has progressed through Assembly approval (72–1–1 on 1/30/2025) and multiple committee amendments; as of 11/13/2025 it was reported by the Senate Budget & Appropriations Committee.

Compiled from official sources — confirm details with the bill’s official record.

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