NJ A1155

New Jersey Department of Health would establish a statewide population-based Parkinson's disease registry to collect data on incidence and prevalence of Parkinson's disease and Parkinsonisms

Health care providers diagnosing or treating Parkinson's disease must report each unique case to the registry, including cases diagnosed prior to the act's effective date

Patients may opt out of the registry at any time; if they opt out, only the incidence of diagnosis will be recorded with no further personal data collected

Registry information is confidential and protected from subpoena or disclosure in legal proceedings, though data may be shared with other state registries, federal agencies, and researchers under strict confidentiality agreements

An advisory council of at least 9 members (including neurologists, movement disorder specialists, patients, and researchers) will guide registry development, with annual public reports required beginning 18 months after enactment