SB1047 - Neurodegenerative disease registry program.

Senate Bill No. 1047 CHAPTER 1000 An act to amend Sections 103871 and 103871.2 of the Health and Safety Code, relating to public health. [ Approved by Governor September 30, 2026. Filed with Secretary of State September 30, 2026. ] LEGISLATIVE COUNSEL'S DIGEST SB 1047, Niello. Neurodegenerative disease registry program. Existing law, until January 1, 2028, and to the extent funds are made available for these purposes, requires the State Department of Public Health to establish a system for the collection of information determining the incidence and prevalence of neurodegenerative diseases, including, but not limited to, amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease. Existing law requires a hospital, facility, physician and surgeon, or other health care provider diagnosing or providing treatment to a patient for a neurodegenerative disease to report each case of a neurodegenerative disease to the department, as prescribed. Existing law requires the department to designate the specified neurodegenerative diseases required to be reported in the state or any part of the state. Existing law specifies that for this purpose, “neurodegenerative disease” may include, but need not be limited to, Alzheimer’s disease, multiple sclerosis, and Huntington’s disease. This bill would require the department to establish a system for the collection of information determining the incidence and prevalence of frontotemporal degeneration (FTD). This bill would specify that “neurodegenerative disease” may also include other dementias. The bill would extend the requirements of these provisions until January 1, 2032. Digest Key Vote: MAJORITY Appropriation: NO Fiscal Committee: YES Local Program: NO Bill Text The people of the State of California do enact as follows: SECTION 1. Section 103871 of the Health and Safety Code is amended to read: 103871. (a) The department shall collect data on the incidence of neurodegenerative disease in California. (b) The department shall establish a system for the collection of information determining the incidence and prevalence of neurodegenerative diseases, including, but not limited to, amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, and frontotemporal degeneration (FTD). The department shall designate the specified neurodegenerative diseases as a disease required to be reported in the state or any part of the state. All cases of neurodegenerative disease diagnosed or treated in California shall be reported to the department. (c) The department shall provide notification of the mandatory reporting of neurodegenerative disease on its internet website and shall also provide that information to associations representing physicians and hospitals and directly to the Medical Board of California at least 90 days prior to requiring information be reported. (d) A hospital, facility, physician and surgeon, or other health care provider diagnosing or providing treatment for a patient with a neurodegenerative disease shall report each case of a neurodegenerative disease to the department in a format prescribed by the department. (e) If the hospital or other facility fails to report in a format prescribed by the department, the department’s authorized representative may access the information from the hospital or the facility and report it in the appropriate format. In these cases, the hospital or other facility shall reimburse the department or the authorized representative for its costs to access and report the information. (f) A physician and surgeon, hospital, outpatient clinic, and any other facility, individual, or agency providing diagnostic or treatment services to a patient with a neurodegenerative disease shall grant to the department or the authorized representative access to all records that would identify a case of a neurodegenerative disease or would establish characteristics of a neurodegenerative disease, treatment of a neurodegenerative disease, or medical status of any identified patient with a neurodegenerative disease. Willful failure to grant access to those records shall be punishable by a civil penalty of up to five hundred dollars ($500) each day access is refused. Civil penalties collected pursuant to this subdivision shall be deposited by the department in the General Fund. (g) Except as otherwise provided in this chapter, all of the information collected pursuant to this section shall be confidential. For purposes of this chapter, this information shall be referred to as “confidential information.” (h) The program shall be under the direction of the director, who may enter into contracts, grants, or other agreements as are necessary for the conduct of the program. The award of these contracts, grants, or funding agreements shall be exempt from Part 2 (commencing with Section 10100) of Division 2 of the Public Contract Code. This chapter shall be implemented only to the extent funds are made available for its purposes. (i) For the purposes of this section, “neurodegenerative disease” may also include, but need not be limited to, Alzheimer’s disease and other dementias, multiple sclerosis, and Huntington’s disease. SEC. 2. Section 103871.2 of the Health and Safety Code is amended to read: 103871.2. This chapter shall remain in effect only until January 1, 2032, and as of that date is repealed.