What are the Reportable Diagnostic Criteria?

Patient encounters for diagnosis or treatment of a neurodegenerative disease occurring on or after July 1, 2023, are reportable within the parameters described below, but historical backload is not required. The International Classification of Diseases, Tenth Revision (ICD-10) codes will be used to identify reportable cases. Any California resident patient encounter for the diagnosis or treatment of a neurodegenerative (see ICD-10 codes in Table 1) may be reportable, but only when the code is documented as an Encounter Diagnosis. 

 Table 1. Reportable ICD-10 Codes and Their Clinical Descriptions 

Any encounter type can trigger the requirement for reporting, including ambulatory visits, emergency department visits, inpatient hospital stays, non-acute institutional stays, and other outpatient visits. However, encounters are only reportable when (a) the patient has not been previously reported to the CNDR or CPDR or (b) the triggering reportable diagnosis resulted in a change to the medical record (either entering an initial diagnosis or change in diagnosis) during the encounter; thus encounters are not reportable if the qualifying diagnosis is noted on the Problem List but is not applied to the encounter itself. Reportable encounters include face-to-face visit as well as certain non-face-to-face visits (telemedicine, telephone, online/e-visits) that include the specific diagnoses addressed. However, ancillary encounters (e.g., lab, imaging, cardio-pulmonary, and therapies), are excluded from the triggering encounter list. Inpatient encounters can rely on diagnostic coding done for hospital billing purposes to trigger reportability.

Figure 1. Flow chart of Reportable Neurodegenerative Disease Cases

What is Reportable?

Reportable data elements are identified in the Neurodegenerative Disease Guide to Reporting (PDF). Below are some of the data elements that will be required to report for manual reporting for a full list of the data elements please review Appendix 1. Table of Data Elements for Manual Reporting to the California Neurodegenerative Disease Registry (PDF)​.

• Patient ID:
• Name (Last, First, M)
• Date of Birth
  
• Sex (Gender)
  
• Address
• and more
• Patient Demographics:
• Race
• Ethnicity
• and more
• Patient Visit Information:
• Attending Doctor
• Consulting Doctor
• and more
• Physician Identifiers (Primary):
  
• Physician Name
• Author NPI - Physician ID
• and more
• and more​

Below are some of the data elements that will be required to report for electronic reporting for a full list of the data elements please review Appendix 2. Table of Data Elements for Electronic Reporting to the California Neurodegenerative Disease Registry (PDF). 

• Facility ID:
  
• Reporting Facility Name
• Reporting Facility ID
• Facility Address
• and more
• Software ID – If using HL-7:
• Software Vender Organization
• Software Version or Release Number
• and more
• Patient ID:
  
• Name
• Date of Birth
• Sex (Gender)
• and more
• Patient Demographics:
  
• Race
  
• Ethnicity
  
• and more​
  

What is the Timeframe and Case Submission Deadlines?

What are the Required Data Elements?

All data elements listed in the Neurodegenerative Disease Guide to Reporting (pdf)​ Appendix 1 and Appendix 2 are required or required if available. If a data element is required, it must be transmitted with a value other than empty, blank, or null, or the record will not be accepted. For a data element that is required if available, it must be sent when a known value is available in the sending system. However, if a data element has an allowable code for "unknown", then that code should be transmitted for that element instead of an empty value.

How to Report?​

Please register your organization's intent to report before the July 1, 2023, deadline!​​

Per requested registration information, please determine whether you can report automatically with your EHR. If your facility cannot interface directly, you can use the Direct Data Entry Web Portal.

Steps to Start Reporting:

Step 1: Regist​​er to Report

First-time users will need to REGISTER by completing the CNDR Electronic and Manual Reporting Registration Form (pdf) and submit it to CDSRBHelp@cdph.ca.gov.  If you will be reporting via the Web Portal (Manual Reporting), please also complete the CalREDIE Neurodegenerative Disease Reporter Account Authorization Form (pdf) and submit it to CDSRBHelp@cdph.ca.gov.

Facilities are required to register for reporting on behalf of represented neurologist within an organization. Registration information includes Lead physician contact, administrative/business management contact, technical interface contact, EHR vendor information for the purpose of providing a certificate for submission to the web service where applicable.

If you are currently reporting Parkinson's​ data and your intention is to add reporting of MS data, please email us at CDSRBHelp@cdph.ca.gov to let us know.

Step 2: Onboarding – If your facility has registered w​hat are the next steps.

Pick a Transmission Method:​

Submit Data via Direct Data Entry Web Portal:

• First time users will need to create an account by completing the CNDR Electronic and Manual Reporting Registration Form​ (pdf) and the CalREDIE Neurodegenerative Disease Reporter Account Authorization Form​ (pdf) and submitting it to CDSRBHelp@cdph.ca.gov. 
• Once your account is approved for submissions, you may begin submitting your neurodegenerative disease reports.
• If you are currently submitting Parkinson's data through the web portal and you will be reporting your MS data via the same method, please email us at CDSRBHelp@cdph.ca.gov to let us know.

Electronic Interface Options: If your facility will be reporting utilizing an electronic interface between your EHR system and CNDR, the next steps are as follows:

• Contact CDSRBHelp@cdph.ca.gov to discuss options for secure connection methods and transmission format standards
• Visit the Self-Testing Portal:
• Here you can download a sample HL7 Message that your team can use to format your message.
• Once your message passes validation from the portal, a reportable case trigger mechanism from your EHR needs to be identified and established.
• Your facility has passed validation, and a reportable case identification mechanism has been identified.
• The next step is to begin acceptance testing by sending test messages to the state.
• Request credentials for your message submission method (SOAP, SFTP, FHIR) by sending an email to CDSRBhelp@cdph.ca.gov.
• Once your message submissions have been validated your facility will be moved to production for ongoing submissions to the central registry.
• If you are currently submitting Parkinson's data through the electronic interface and you will be reporting your MS data via the same method, please email us at CDSRBHelp@cdph.ca.gov to let us know.

All LIPs and EHR vendors should reference the Neurodegenerative Disease Guide to Reporting (pdf)​ and review the reporting requirements to ensure the required data is being transmitted.

​What is the Guidance on Reporting?​

To maintain high standards in reporting accuracy, please visit our Resources for Reporting​​ section. All healthcare facilities and providers should reference the Neurodegenerative Disease Guide to Reporting(pdf) and review the reporting requirements to ensure the required data is being transmitted.