Bill > S1421

This bill establishes a Parkinson's disease registry in Massachusetts. The key provisions include: 1. The Department of Public Health (the Department) will collect data on the incidence of Parkinson's disease and related conditions, known as Parkinsonisms, in the state. The Department will establish a Parkinson's Disease Registry Advisory Committee to assist in the development and implementation of the registry. 2. All patients diagnosed with Parkinson's disease or related Parkinsonisms must be provided written and oral notice about the registry, and patients who do not wish to participate can opt-out in writing. 3. The Department will designate Parkinson's disease and related Parkinsonisms as diseases required to be reported in the state, and all cases diagnosed or treated in Massachusetts must be reported to the Department. 4. The information collected in the registry will be kept confidential, with strict protocols for accessing and sharing the data. Patients will have access to their own information. 5. The bill sets an effective date of July 1, 2021 for the establishment of the registry, and January 1, 2022 for the remaining provisions.