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Chronic Disease Surveillance and Research Branch

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California Neurodegenerative 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€“December
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, CNDR: 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.

Announcements


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Alzheimerā€™s Disease Reportingā€‹

Neurodegenerative Disease Data Providers,

California Health and Safety Code (HSC) Section 103871 requires all hospitals, facilities physicians and surgeons, or other health care providers diagnosing or pro viding treatment for a patient with a neurodegenerative disease such as Alzheimer's disease to report each case to the California Neurodegenerative Disease Registry (CNDR) starting July 1, 2025. CNDR has made reporting relatively easy for data providers and have also developed a California Neurodegenerative Disease Registry Guide to Reporting for your reference.

Do You Have Reporting Questions?

Please read the California Neurodegenerative Disease Registry Guide to Reporting to become familiar with how CNDR collects neurodegenerative disease information, the information that is required to report, required to report if available, and the reporting deadlines.

If you are a new neurodegenerative disease data provider and need assistance with updating your system to automatically or manually report neurodegenerative disease information, contact our program at CDSRBhelp@cdph.ca.gov.

If you are interested in additional information about the program please visit and browse the CNDR https://go.cdph.ca.gov/cndr website.

 If you have any questions regarding the information provided, please email us at CDSRBhelp@cdph.ca.gov.

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Sincerely,

CNDR Data Teamā€‹

Your Facilities Can Now ā€‹Report Alzheimerā€™s Disease Cases!

If you are interested in reporting Alzheimerā€™s Disease case encounters, you can start voluntarily reporting to the California Neurodegenerative Disease Registry (CNDR)! 

More information about Alzheimer disease reporting, please click the link to the guide Neurodegenerative Disease Guide to Reporting (PDF).ā€‹

CNDR Virtual Listening Session Header

Amyotrophic Lateral Sclerosis (ALS): September 30, 2024

To view the listening sessions please click on the links below:

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

Multiple Sclerosis and Alzheimerā€™s Disease: January 17ā€“18, 2023

To view the listening sessions please click on the links below:

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



Legislation Update

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, 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


Fact Sheets

Reports 

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