Funded Studies
Study Rationale: Nebraska’s Parkinson’s Disease Registry (NPDR) will roll out a new electronic data collection system, enforce state statutes requiring that physicians participate in reporting, enhance the completeness and accuracy of existing data and establish linkages with other internal and external data sets to validate and complement NPDR data. NPDR also seeks to establish relationships with other state registries and entities interested in serving the Parkinson's disease (PD) community.
Hypothesis: We hypothesize that the implementation of electronic data collection, the establishment of linkages with complementary data sets and active engagement with other PD entities will enhance access to meaningful data for use in evaluating PD treatments and promoting PD research.
Study Design: NPDR staff will onboard high volume facilities to increase the number of physicians and pharmacies reporting electronically. Linkages with other internal and external data sets will validate and enhance NPDR data completeness. Engagement with other Parkinson’s disease programs will promote increased data collection and use.
Impact on Diagnosis/Treatment of Parkinson’s disease: Support of the NPDR electronic system implementation, operations and maintenance will result in the collection of more timely and accurate data and facilitate acceleration of PD research. The NPDR will transform raw PD surveillance data into meaningful information to guide and evaluate efforts to treat and control PD.
Next Steps for Development:NPDR's purpose is not just to gather the data and store it, but to provide high quality data for innovative research. NPDR will initiate collaboration with national, state and local level PD programs to provide data to increase awareness, knowledge and capabilities for PD prevention, screening and survival.