SB 1047: 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 Gehrigs 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), Alzheimers disease, multiple sclerosis, and Huntingtons 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 includes frontotemporal degeneration (FTD) and may also include other dementias. The bill would extend the requirements of these provisions until January 1, 2030. 2032.