Neurodegenerative disease registry program.

Plain English Breakdown

The official source material does not provide specific details on the exact diseases that must be included in the registry beyond ALS, Alzheimer’s disease, Huntington’s disease, FTD, and other dementias. The candidate explanation incorrectly includes multiple sclerosis as a required reportable condition.

Neurodegenerative Disease Registry Program

This law requires the State Department of Public Health to create a system for collecting information about neurodegenerative diseases, including frontotemporal degeneration (FTD) and other dementias, until January 1, 2032.

What This Bill Does

• Requires the State Department of Public Health to set up a system to collect data on how many people have neurodegenerative diseases like ALS, Alzheimer’s disease, multiple sclerosis, Huntington’s disease, and frontotemporal degeneration (FTD).
• Specifies that health care providers must report cases of these diseases to the department.
• Extends the requirement for collecting this information until January 1, 2032.

Who It Names or Affects

• The State Department of Public Health will be responsible for setting up and maintaining the registry system.
• Health care providers such as hospitals, clinics, doctors, and other medical professionals must report cases to the department.

Terms To Know

Neurodegenerative disease

A type of illness that affects the brain and nervous system over time, causing problems like memory loss or movement issues.

Incidence

The number of new cases of a disease in a specific area during a certain period of time.

Prevalence

The total number of people who have a disease at any given time, including both new and existing cases.

Limits and Unknowns

• Funding for the program is not guaranteed beyond what is currently available.
• The bill does not specify how the collected data will be used or shared.

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 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.

Current Bill Text

Download Bill PDF