California Neurodegeānerative 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
|
JulyāSeptember |
December** |
OctoberāDecemberāāā
|
March |
JanuaryāMarch
|
June
|
|
AprilāJune |
September
|
* For inpatient settings, the discharge date may be used as the date of the patient encounter.
**The first reporting period (CPDR: Ongoing, CNDāR: JulyāSeptember 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.
āāā
| āAmyotrophic Lateral Sclerosis (ALS): September 30, 2024ā
| āTo view the listening sessions please click on the links below: āIf 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 | āMultiple Sclerosis and Alzheimer's Disease: January 17-18, 2023ā
| | āTo view the listening sessions please click on the links below: āāāIf 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.āā |
|
|
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