An Act to create 36.47, 146.82 (2) (a) 8m. and 255.18 of the statutes; Relating to: a statewide Parkinsonâs disease registry. (FE)
SB 570 would create a statewide Parkinson’s disease registry housed at the University of Wisconsin-Madison School of Medicine and Public Health’s Department of Population Health Sciences, or its successor. The registry would collect, store, and disseminate information on the incidence, prevalence, outcomes, diagnosis, treatment, health, functional outcomes, and survival related to Parkinson’s disease and related conditions defined in the bill as “parkinsonism.” The bill also requires the department to maintain a public website with annual reports, dashboards, and other resources about Parkinson’s disease in Wisconsin.
The bill establishes mandatory reporting requirements for health care providers and health care facilities that diagnose or treat Parkinson’s disease or parkinsonism. Providers must notify patients about the registry, offer informational materials, and allow patients to affirmatively decline participation in the collection of detailed data; if a patient declines, only the incident of the condition must be reported. The bill also allows reporting through electronic medical record systems and authorizes UW-Madison to share registry data with other state registries, federal agencies, local health officers, and qualified researchers under confidentiality safeguards.
SB 570 would create new statutory sections in ch. 36 and ch. 255 and amend the medical-records disclosure statute to permit release of limited patient information to the UW registry and specified recipients. It would impose new reporting duties on physicians, surgeons, physician assistants, nurse practitioners, and the health care facilities or electronic medical record vendors associated with them. The bill also creates strict confidentiality rules, limits redisclosure, bars subpoena and evidentiary use of protected registry information, and requires public reporting through a dedicated website. In practical terms, it would expand state public-health data collection infrastructure for neurodegenerative disease surveillance and research.
The bill appears to have been introduced as a public-health and research measure, with no recorded committee transcript discussion or votes available in the provided materials. Its structure suggests a policy goal of improving statewide tracking of Parkinson’s disease and supporting research collaboration while preserving patient privacy. The absence of recorded opposition or amendments in the provided context makes the overall sentiment difficult to gauge beyond the bill’s apparent informational and medical-research orientation. The bill ultimately failed to pass pursuant to Senate Joint Resolution 1.
The main points of potential contention are likely to be patient privacy, provider reporting burden, and the scope of mandatory data collection. The bill requires health care providers and facilities to report detailed case information, though it gives patients the right to decline participation in the registry’s data collection and limits reporting in that case to the incident of disease. Another possible issue is the role of UW-Madison and its Department of Population Health Sciences as the central repository and gatekeeper for sensitive health data, including the authority to share data with researchers and outside agencies under confidentiality conditions. The bill’s confidentiality provisions are extensive, but the mandatory reporting framework and use of electronic medical record systems could still raise implementation concerns among providers and privacy advocates.