California Neurodegenerative Disease Registry (CNDR)
In 2021, California Health and Safety Code (HSC) 103871 required the California Department of Public Health (CDPH)to collect neurodegenerative disease information to determine its incidence and prevalence in California. HSC 103871 also requires a hospital, facility, physician and surgeon, and other health care providers to report each case of a neurodegenerative disease to CDPH.
The CNDR is the California statewide population-based neurodegenerative disease surveillance system that collects other neurodegenerative disease information such as Multiple sclerosis (MS). CNDR started collecting MS information in July 2023 and plans to collect Alzheimer's disease information in 2025. CNDR is a valuable public health resource and data from the registry may be used advance our understanding about neurodegenerative disease in California and it's impact. CNDR data will be accessible to qualified researchers with valid scientific approval to perform neurodegenerative disease research.
In 2023, HSC 103871 was amended. One of the amendments were in subsection (b) which added the following words, āā¦neurodegenerative disease, including, but not limited to, amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease. Another amendment was in subsection (i) which amended āneurodegenerative disease" to say, may also include, but need not be limited to, Alzheimer's disease, multiple sclerosis, and Huntington's disease." ā
CNDR has quarterly data submission deadlines. Please see the table below. If you have a question(s) about how to submit your neurodegenerative disease information to CNDR, please contact us at CDSRBHelp@cdph.ca.gov.
Data Collection Timeframe and Case Submission Deadlines
| July ā September | December** |
October ā Decemberāāā
| March |
January ā March
| June
|
| April ā June | September
|
ā* For inpatient settings, the discharge date may be used as the date of the patient encounter.
**The first reporting period (CPDR: Ongoing, CNDāR: July-September 2023 ) has a six-month deadline (i.e., data is due to the CNDR by 3/31/2024); All subsequent reporting periods have three-month deadlines.
For additional information about CNDR, please review links below such as the reports, virtual listening sessions, quick links, resources for reporting provided below.
|
āāAssembly Bill (AB) 424, was signed into law by Governor Gavin Newsom on October 8, 2023. AB 424 aāāmends Health and Safety Code (HSC) 103871. One of the changes is that HSC 103871 section (b) was amended by adding the following words, āā¦include, but not be limited to, amyotrophic lateral sclerosis also known as Lou Gehrigās disease.ā Click the link to access the Chaptered version of AB 424. ā
|
Fact Sheets
Reports
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 17ā18, 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.