Parkinson's Registry

The South Carolina Parkinson's Disease Research Collection Act requires all physicians within the state of South Carolina who are providing treatment or diagnosing Parkinsons 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 Parkinsons 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 like PD to increase understanding and catalyze research. The creations 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 need 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 Parkinsons 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.

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The SC Parkinson's Disease Registry is currently only collecting information from MUSC locations. As phase II and III are developed, the registry team will alert more institutions and providers around SC of the mandate to submit cases of PD to the registry and inform patients of the PD research Registry.

FAQs

Find answers to the most frequently asked questions about the Parkinson's Registry below:

Will not participating in the research database impact my clinical care?

No, there is no impact on clinical care for participating or opting out of the research database.

What sort of data will be collected for the registry?

The SC registry will be collecting information that is already present in the patient's electronic health records. Information that will be shared with the mandated registry has been limited to what is required to establish incidence, prevalence and complete deduplication efforts.

Is there anything that the patient must do to comply with the mandate?

No, all reporting is done by the patient's physician.

How will data in the registry and research database be protected?

Ensuring the data that is reported to the registry and shared with the research database is protected is a main priority for the registry team. The Medical University of South Carolina and their biomedical informatic center will maintain patient confidentiality by coding some identifying information to ensure that it is difficult to link submissions back to the patients. MUSC will only allow researchers who have obtained approval from the advisory committee, local IRB approval and have agreed in writing to maintain the confidentiality of the information, have access to the research database content once it is developed.

Can I be removed from the registry?

You cannot be removed from the Parkinson’s Disease registry as it is a statewide mandate, all patients diagnosed with Parkinson’s in the state of South Carolina must be included in the Registry. When the research database is established patients will be given the opportunity to opt out of being included in the research database.

What will the data be used for?

The data collected will be used to establish the incidence and prevalence of Parkinsons Disease within the state of South Carolina. The information that is collected will be used to inform public health officials and the additional data that is collected in the Parkinsons disease database could be used by approved researchers to study the possible connections between the disease and factors like age/location/military service.

Who will have access to data?

Data will be managed by the registry team and the Biomedical Informatic Center at MUSC. Researchers who have obtained local IRB approval and have gotten approval from the Parkinsons Disease Database Advisory Committee (PDDAC) can have coded data from the research database shared with them. The information obtained via the mandate will be used for public health reporting needs and a reported to be put out by MUSC.

Physician Resources

Advisory Committee Members

Parkinson's Registry

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FAQs