Establishing the South Carolina Parkinson’s Disease Registry

Study Rationale: The South Carolina Parkinson’s Disease (PD) Registry aims to collect data on the incidence and prevalence of PD in the state. Established by South Carolina Parkinson's Disease Research Collection Act, this registry will facilitate research efforts and foster collaboration with other state and national registries.

Hypothesis: Although establishment of the registry is not, by definition, a hypothesis-driven study, we expect that systematic reporting and data collection will facilitate research in PD throughout the state and foster collaboration with other state and national registries.

Study Design: The aim of this project is to establish a system for collecting and disseminating data on the incidence and prevalence of PD and related disorders in the state of South Carolina. In the first year, our team plans to establish an advisory committee, build a statewide network of providers, inform the community of the reporting requirement and build a team to support the registry.

Impact on Diagnosis/Treatment of Parkinson’s disease: Once established, the registry will facilitate PD research by identifying stakeholders, demonstrating the impact of PD in South Carolina, building a network of providers, facilitating data collection and aiding recruitment for clinical studies. All of these efforts will aid the development of therapeutic interventions for PD.

Next Steps for Development: As the data set is developed and expanded, population health studies can be carried out directly from the data collected in the registry. In addition, recruitment into clinical trials will be facilitated for individuals who consent to be contacted for research.