Reporting by Health Care Professionals and Facilities

    The Registry Act requires physicians/surgeons, pharmacists, other health care
    practitioners as well as hospitals, health care facilities and other agencies
    diagnosing and treating PD patients to report their cases and allow access to
    their records by authorized Registry staff.  

    For detailed information on the legislation as enacted, click here:

                                           CPDR Act (AB2248)

    For the Pilot Project, an “active case ascertainment” approach will be taken.  
    Trained registry pilot project staff will be contacting and visiting facilities where
    PD care is provided to collect information on individual patients.  Some of this data
    will be available in established electronic databases maintained by the clinical
    and pharmacy institutions.  In other cases, project staff will obtain information
    directly from other sources such as medical records.   In response to interest
    expressed by the PD community, there will also be a mechanism for patients to
    voluntarily self-register.   

    Physicians will also be encouraged to begin active reporting of PD cases in the
    near future, utilizing the upcoming new version of the California Morbidity Report.

    HIPAA

    As a public health surveillance project mandated by state law, the Registry is
    permitted under HIPAA to obtain identifying and other medical data without
    obtaining informed consent from individual patients.  Maintaining strict
    confidentiality is a high priority of the Registry, and detailed data security
    procedures will be followed, in accordance with applicable state and federal laws.

                                   HIPAA and Public Health Information

    For more information on reporting by providers, please read the following Fact
    Sheet:
                                               Provider Fact Sheet
California Parkinson's Disease Registry