The Utah Department of Health has issued a rule that makes Parkinson disease (PD) a reportable condition in the state of Utah. Similar to the Utah Cancer Registry, the PD registry will be housed at the University of Utah. This new PD Registry will join a list of other state databases (such as the Utah Cancer Registry and the Utah Autism Registry) designed to track important diseases and public health hazards.
The rule was issued to improve knowledge about the causes and treatment of PD. Surprisingly little is known about how common this condition is among different population groups, what the causes are, and whether the patterns of disease are changing over time. Collecting and analyzing this information in an entire state will provide important clues about the causes of the disease, as well as help to ensure that adequate health care resources are available for all patients.
The Registry Rule will ask physicians/surgeons, and 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.
Reporting by patients is encouraged, although it is entirely voluntary. Collections of some identifying information will prevent double reporting by physicians and patients.
A registry capturing patients from an entire geographic area - especially one in which the disease is common - will be one-of-a-kind in the world. The registry will have direct benefits to healthcare planning for the state, and also for patients and researchers world-wide. No other state or country possesses the database capabilities enjoyed by Utah including the Utah Cancer Registry, the Utah Autism Registry and the Utah Population Data Base. The registry will also facilitate efforts of the Utah Genome Project and make resources of this novel project available to PD patients and researchers. The registry is designed to be an initial step in the conquest of this disease.