View Single Post
Old 12-22-2009, 04:28 PM
pnschmidt pnschmidt is offline
New Member
 
Join Date: Dec 2009
Posts: 4
10 yr Member
pnschmidt pnschmidt is offline
New Member
 
Join Date: Dec 2009
Posts: 4
10 yr Member
Default More registries

Another poster spoke about the recent registry legislation. National and state-wide registries are typically designed to study incidence of a disease, not outcomes. The Nebraska registry requires physicians and pharmacists to notify the Nebraska registry upon first diagnosis of a patient. Interestingly, there is no mechanism to update the registry if a patient is later found to not have Parkinson's, as a significant fraction seem to be. The national registry bill (H.R. 1362) specifies "a system to collect data on Parkinson’s disease including information with respect to the incidence and prevalence of the disease in the United States... the age, race or ethnicity, gender, military service if applicable, and family history of individuals who are diagnosed with the disease". While data on the incidence and prevalence of PD and demographic data will be interesting, this is not data that will lead to substantial scientific insight.
pnschmidt is offline   Reply With QuoteReply With Quote