Section 111:243 - Parkinson's disease registry(a) The department shall establish a Parkinson's disease registry for the collection of information necessary to determine the incidence and prevalence of Parkinson's disease in the commonwealth.(b) There shall be within the department a Parkinson's disease registry advisory committee to advise and assist in the development, implementation and progress of the Parkinson's disease registry established in subsection (a). The committee shall review and submit recommendations on: (i) what data shall be collected, including, but not limited to, demographic information and data by areas and regions of the commonwealth, with specific data from urban, low and median income communities and minority communities of the commonwealth; (ii) the means of collecting and disseminating such data; (iii) how to ensure privacy and confidentiality of such data; (iv) the purpose, design and functionality of the registry; and (v) the implementation of the registry. The committee shall recommend to the department any information deemed necessary and appropriate for the statistical identification and planning for treatment and education of health care providers and persons diagnosed with Parkinson's disease. The committee shall consist of the commissioner, or a designee, and 10 members to be appointed by the commissioner as follows: 3 physicians, 1 of whom shall be a general neurologist, 1 of whom shall be a movement disorder specialist and 1 of whom shall be a primary care physician; 1 health informaticist; 2 population health researchers familiar with registries; 2 Parkinson's disease researchers; and 2 persons diagnosed with Parkinson's disease. The committee shall meet at least bi-annually to assess registry progress and recommend changes.
Mass. Gen. Laws ch. 111, § 243
Added by Acts 2021, c. 24,§ 45, eff. 7/1/2021.