The South Carolina Parkinson's Disease Research Collection Act requires all physicians within the state of South Carolina who are providing treatment or diagnosing Parkinson's disease (PD) or Parkinsonism patients to report all cases of the disease to the SC Parkinson's registry. MUSC has been tasked by the state of SC to establish a system for data collection and will be managing the submitted data. This mandate was signed into law on May 23, 2022 by Governor Henry McMaster and will establish a statewide registry in SC to understand the incidence and prevalence of Parkinson's and parkinsonism across the state. The CDC authorized the creation of the National Neurological Conditions Surveillance System (NNCSS) in 2016. They are using analytical methods to track the epidemiology of neurological conditions, such as PD, to increase understanding and catalyze research. The creation of statewide registries will assist the NNCSS in having accurate data to analyze. The Michael J Fox Foundation has been helping lobbying efforts in states across the US to develop these registries. There are many similar initiatives across the country, Nebraska, California, Maryland, and Washington have already established registries related to PD.
The information obtained will allow for more understanding of the disease within the state by collecting data that could track any patterns of the disease and its distribution among populations and locations. The South Carolina Parkinson’s Disease Research Collection Act law requires that every patient with a diagnosis of Parkinson’s disease (PD) or Parkinsonism be added to the mandated registry. While the law requires all cases of PD or Parkinsonism be reported to the Medical University of South Carolina (MUSC), only the incidence of PD is required, and patients may opt out of providing additional information to the research database that the PD research collection act also says MUSC needs to establish. Physicians who diagnose or provide care for patients with Parkinson’s will inform patients of the research database and allow them the opportunity to opt-out. This process will be established after the mandated registry is running and all information will be stored on a secure server. Patient privacy is of high importance for the registry team, and we will be taking measures to ensure confidentiality. The registry team is also getting guidance from the Parkinson's Disease Database Advisory Committee who has assisted throughout the development process and will assist the team in selecting who can later have access to the coded data to conduct research.
