Health care providers diagnosing or providing treatment to Parkinson’s disease patients will be required to report each case of Parkinson’s disease to the California Department of Public Health (CDPH) beginning July 1, 2018. All providers who will be required to report must first register with CDPH through the designated provider gateway, which should be available on the CDPH Parkinson's Disease web page beginning in early June.

In April, CDPH issued its initial version of the California Parkinson’s Disease Registry Implementation Guide that details how health care providers can comply with the reporting mandate. The guide, available at www.cdph.ca.gov/parkinsons, provides information for reporting Parkinson’s disease data, outlines who is required to report, the timeline for reporting, and the manual and electronic methods for transmitting data to the California Parkinson’s Disease Registry.

Since the issuance of the initial implementation guide, the California Medical Association (CMA) and other stakeholders have expressed concerns to CDPH about the scope, breadth and timing of this new reporting obligation. CDPH is taking a number of steps in response to those concerns. CDPH will release an updated version of its implementation guide, as well as slide presentations and updated FAQs in early June. CDPH will also continue to work closely with physician offices, medical groups and large health systems to optimize integration of the reporting interface with electronic health record systems. Manual entry will remain an option for all providers.

In its implementation guide, CDPH instructs providers to report cases determined by five specific ICD-10 codes, not all of which constitute a diagnosis or treatment of Parkinson's disease. CMA has expressed concerns to CDPH that because the statutory language only authorizes providers to report cases of Parkinson's disease, reporting those other ICD-10 cases will subject providers to risk of liability for disclosure of protected health information under California’s Confidentiality of Medical Information Act. CDPH has taken CMA's concerns under advisement, but at this time has not agreed to limit the reportable ICD-10 codes. Until this issue is resolved, providers are advised to proceed cautiously and to consult their professional liability carrier for specific guidance on compliance with this reporting obligation.

The data collected will be used to measure the incidence and prevalence of Parkinson’s disease. California’s large and diverse population makes it ideal for expanding the understanding of this disease to improve the lives of Parkinson’s patients.

For more information, see CDPH’s fact sheet, which provides more details related to the new law.