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
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.
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
Provider Fact Sheet