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Chronic Disease Surveillance and Research Branch

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California Neurodegeā€‹nerative Disease Registry (CNDR)

California Neurodegenerative Disease Registry (CNDR) is California's statewide population-based neurodegenerative disease surveillance system.  In 2021, California enacted Health and Safety Code (HSC) section 103871 which requires the CDPH to collect other neurodegenerative disease information (other than information on Parkinson's disease, for which the CDPH began collecting information in 2018).  CDPH will use the data collected by CNDR to determine incidence and prevalence of other neurodegenerative diseases such as Alzheimer's disease, multiple sclerosis (MS), Huntington's disease, and amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease in California. HSC also gives the director the authority to determine which other neurodegenerative diseases will be collected and when collection begins.  HSC 103871 also requires a hospital, facility, physician and surgeon, and other health care providers to report each case of neurodegenerative disease to CDPH.

In 2023, CNDR started collecting MS information. CNDR is a valuable public health resource and data from the registry may be used to advance our understanding about neurodegenerative disease in California and its impact. CNDR data will be accessible to qualified researchers with valid scientific approval to perform neurodegenerative disease research.

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

Date of Patient Encounter* Submission Deadline (Is the last day of each month).
Julyā€“September December**
Octoberā€“Decemberā€‹ā€‹ā€‹
March
Januaryā€“March 
June
Aprilā€“June September
* For inpatient settings, the discharge date may be used as the date of the patient encounter.
**The first reporting period (CPDR: Ongoing, CNDā€‹R: Julyā€“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. 



ā€‹ā€‹ā€‹ā€‹ā€‹ā€‹ā€‹ā€‹ā€‹ā€‹ā€‹ā€‹ā€‹Announcementsā€‹

ā€‹ā€‹ā€‹CNDR Virtual Listening Session Header

ā€‹Amyotrophic Lateral Sclerosis (ALS): September 30, 2024ā€‹

ā€‹To view the listening sessions please click on the links below:

ā€‹If you have any additional questions about the CNDR, please send your inquiries to CDSRBhelp@cdph.ca.govā€‹ email and we will be happy to respond.ā€‹

ā€‹Multiple Sclerosis and Alzheimer's Disease: January 17-18, 2023ā€‹

ā€‹To view the listening sessions please click on the links below:

ā€‹ā€‹ā€‹If you have any additional questions about the CNDR, please send your inquiries to CDSRBhelp@cdph.ca.govā€‹ email and we will be happy to respond.ā€‹ā€‹



Legislation Update

ā€‹ā€‹Assembly Bill (AB) 424, was signed into law by Governor Gavin Newsom on October 8, 2023. AB 424 aā€‹ā€‹mends Health and Safety Code (HSC) 103871. One of the changes is that HSC 103871 section (b) was amended by adding the following words, ā€œā€¦include, but not be limited to, amyotrophic lateral sclerosis also known as Lou Gehrigā€™s disease.ā€  Click the link to access the Chaptered version of AB 424. ā€‹


Fact Sheets

Reports 

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