California Neurodegenerative Disease Registry
California Neurodegenerative Disease Registry (CNDR) is California’s new statewide population-based neurodegenerative disease surveillance system. CNDR will collect data on the incidence and prevalence of neurodegenerative disease in California. In 2021, statewide population-based neurodegenerative disease reporting to CNDR was mandated through the enactment of section 103871 of the California Health and Safety Code.
Starting on July 1, 2023, Health and Safety Code Section 103871 requires hospital, facility, physician and surgeon, and other health care providers to report to California Department of Public Health (CDPH) each case of a neurodegenerative disease that was designated as reportable by CDPH. However, in light of needed initial onboarding to the reporting systems and corresponding logistics, CDPH will be flexible with the reporting due dates for the first reporting period and will assist providers with the process.
Health and Safety Code Section 103871 defines “Neurodegenerative disease” as including, but is not limited to, Alzheimer’s disease, multiple sclerosis, Huntington’s disease, and amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease. CNDR will inform hospitals, facilities, physicians and surgeons, or other health care providers diagnosing or providing treatment for a patient with a neurodegenerative disease about the reporting requirements.
The registry will be a collection of patient data used to determine the incidence and prevalence of neurodegenerative disease in California. In addition, per mandate, this data repository will be accessible to qualified researchers with a valid scientific interest to perform their own studies. Therefore, this registry will serve as an invaluable public health resource to better understand the impact of neurodegenerative disease in California.
Assembly Bill (AB) 424, was signed into law by Governor Gavin Newsom on October 8, 2023. AB 424 amends Health and Safety Code (HSC) 103871. One of the changes is that HSC 103871 section (b) was amended by adding the following words, “…include, but not be limited to, amyotrophic lateral sclerosis also known as Lou Gehrig’s disease.” Click the link to access the Chaptered version of AB 424.
CNDR Virtual Listening Sessions Now Available
To view the listening sessions please use the links below:
If you have comments pertain to the virtual listening sessions that occurred on January 17–18, 2023, please send your comments and/or questions to CDSRBhelp@cdph.ca.gov. Responses will be added to our Frequently Asked Questions and will be added as content on the CNDR website.
If you have any additional questions about the CNDR, please send your inquires to CDSRBhelp@cdph.ca.gov and we will be happy to respond.