Study Rationale:
This project will support operations and enhancement of the California Parkinson’s Disease Registry (CPDR) for one year. CPDR captures and stores information on all Parkinson’s disease cases diagnosed or receiving treatment in California. This information is used to expand our understanding of Parkinson's disease to ultimately improve the lives of those affected.
Hypothesis:
CPDR seeks to answer the question: “How can information on all Parkinson’s disease cases best be collected to provide a rich data source that can be used to improve Parkinson’s disease prevention, survival, treatment and research?”
Study Design:
We will work with health care providers and health systems to improve the quality of Parkinson’s disease registry data statewide. We will also work with national partners to agree on common methods for data collection so different parts of the nation can better collaborate and learn from each other. Finally, while protecting the privacy and confidentiality of all people whose information is in the registry, we will facilitate use of Parkinson’s disease registry data to improve prevention, care, treatment and research.
Impact on Diagnosis/Treatment of Parkinson’s Disease:
The project will result in enhanced data and information available to better prevent, diagnose and treat Parkinson’s disease.
Next Steps for Development:
This project is not a study; however, the enhanced registry will provide data and information that can be used to improve clinical practice related to Parkinson’s disease detection, care and treatment.