Neurodegenerative disease registry program.

Healthcare

Passed Legislature

This bill passed both chambers and reached final enrollment, even if later executive action is not shown here.

Sponsor: Niello (S) , Allen
Last action: 2026-04-13
Official status: April 13 hearing: Placed on APPR. suspense file.
Effective date: Not listed

Plain English Breakdown

The exact date for extension is uncertain as it changed from 2030 to 2032 in the bill's amendments.

Neurodegenerative Disease Registry Program

This law requires California's Department of Public Health to collect information on the incidence and prevalence of neurodegenerative diseases, including frontotemporal degeneration (FTD), until January 1, 2032.

What This Bill Does

Requires the State Department of Public Health to establish a system for collecting data on the incidence and prevalence of neurodegenerative diseases, including frontotemporal degeneration (FTD).
Extends the requirement to collect this information until January 1, 2032.

Who It Names or Affects

The State Department of Public Health
Hospitals and health care providers who diagnose or treat patients with neurodegenerative diseases

Terms To Know

Neurodegenerative disease: A type of illness that damages the brain and nervous system over time, such as Alzheimer's disease.
Frontotemporal degeneration (FTD): A form of dementia that affects behavior and language skills.

Limits and Unknowns

The bill only applies if there are funds available for these purposes.
It does not specify how the collected data will be used or shared.

Bill History

2026-04-13 California Legislative Information
April 13 hearing: Placed on APPR. suspense file.
2026-04-10 California Legislative Information
Set for hearing April 13.
2026-04-06 California Legislative Information
Read second time and amended. Re-referred to Com. on APPR.
2026-03-26 California Legislative Information
From committee: Do pass as amended and re-refer to Com. on APPR. with recommendation: To consent calendar. (Ayes 11. Noes 0.) (March 25).
2026-03-11 California Legislative Information
Set for hearing March 25.
2026-02-26 California Legislative Information
Referred to Com. on HEALTH.
2026-02-13 California Legislative Information
From printer. May be acted upon on or after March 15.
2026-02-12 California Legislative Information
Introduced. Read first time. To Com. on RLS. for assignment. To print.

Official Summary Text

SB 1047, as amended, 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
collect data on the incidence of neurodegenerative disease in California.
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,
amyotrophic lateral sclerosis (ALS),
Alzheimer’s disease, multiple sclerosis, and Huntington’s disease.
This
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”
includes frontotemporal degeneration (FTD) and
may also include
other dementias. The bill would extend the requirements of these provisions until January 1,
2030.
2032.

Current Bill Text

Read the full stored bill text

Download Bill PDF