ASSEMBLY HEALTH COMMITTEE

STATEMENT TO

ASSEMBLY, No. 2980

with committee amendments

STATE OF NEW JERSEY

DATED:  DECEMBER 16, 2024

      The Assembly Health Committee reports favorably and with committee amendments Assembly Bill No. 2980.

      As amended, this bill requires health care professionals to report cases of amyotrophic lateral sclerosis.

      The bill 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, to confidentially report to the department all known cases of amyotrophic lateral sclerosis in a manner to be specified by the department. 

      Any information reported to the department 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 Commissioner of Health (commissioner) 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 in the bill.  In the case of researchers, the commissioner is to 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 is to disclose the minimum amount of information necessary to accomplish a specified research purpose.

      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 National Amyotrophic Lateral Sclerosis Registry, including:  (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.

      This bill was pre-filed for introduction in the 2024-2025 session pending technical review.  As reported, the bill includes the changes required by technical review, which has been performed.

COMMITTEE AMENDMENTS:

      The committee amendments:

      1)  define “ALS” and “health care professional”;

      2)  extend reporting requirements to certain health care professionals;

      3)  remove the reporting requirement for suspected cases;

      4)  provide for the confidentiality of personal identifying information;

      5)  authorize the Commissioner of Health to enter into data sharing agreements;

      6)  require the Department of Health to publish educational materials on its website;

      7)  require the adoption of rules and regulations;

      8)  remove health care facilities from the bill; and

      9)  make technical changes involving usage and to the synopsis.