Neurodegenerative disease registry program

The registry is intended to measure how often neurodegenerative diseases occur in California. It expands state data collection to include FTD and potentially other dementias.

What the law does ​

• Requires the State Department of Public Health to collect incidence and prevalence data on frontotemporal degeneration (FTD).
• Continues mandatory reporting of designated neurodegenerative disease cases diagnosed or treated in California.
• Allows the definition of reportable neurodegenerative diseases to include Alzheimer’s disease, other dementias, multiple sclerosis, and Huntington’s disease.
• Extends the registry program, subject to available funding, until January 1, 2032.

Who it affects ​

• Patients diagnosed or treated for designated neurodegenerative diseases.
• Physicians, hospitals, clinics, and other providers that diagnose or treat those patients.
• The State Department of Public Health and the Medical Board of California.

Context ​

The department must notify providers and the Medical Board of California at least 90 days before requiring reporting.