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ooh - first collect all the typos, misunderstandings and outright lies into one database, then spend a couple of decades trying to untangle the resulting mess... the NHS just tried a national patient database. The questionaire nurses are supposed to show patients is too long (especially when ill) so rarely if ever gets filled in properly. Quoting Rayilyn Brown <[log in to unmask]>: > House Takes First Step to Make Better PD Data a Reality! > > > From: Parkinson's Action Network > Sent: Thursday, September 16, 2010 3:03 PM > To: Rayilyn Brown > Subject: House Takes First Step to Make Better PD Data a Reality! > > > > > Voice your support for better Parkinson's data! > > > Today, the House Energy & Commerce Health Subcommittee marked-up and > passed H.R. 1362, the National MS and Parkinson's Disease Registries Act. > During the Subcommittee mark-up, Dr. Burgess (R-TX), co-author of the > legislation, offered an amendment to expand the bill to become the National > Neurological Diseases Surveillance System Act. The expanded bill now goes to > the full Energy & Commerce Committee for consideration. > > What will the expanded bill do? > > The expanded legislation will establish a national data surveillance > system that will track and collect data on the epidemiology, incidence, > prevalence, and other factors of neurological diseases, including Parkinson's > and Multiple Sclerosis (MS). In order to build the best system possible for > researchers and to use funding wisely, it was recommended by the Centers for > Disease Control and Prevention (CDC) that the data system not only include > Parkinson's and MS but also be opened to all neurological diseases. Learn > more about the bill. > > We estimate that over one million Americans are living with Parkinson's > disease but that figure is just a rough estimate. This lack of core > knowledge inhibits Parkinson's research, treatments, programs, and services. > Better data will fuel scientific inquiry and will advance our understanding > of how to treat and support the Parkinson's community. > > What can you do to help? > > We expect action in the full Committee as soon as next week, so your > Representative needs to hear from you. Once through the full Committee, the > bill has the chance of getting to the House floor for a vote-make sure your > Member knows that the Parkinson's community supports this importation > legislation. > > Thank you for your continuous support. Take action today by e-mailing > your Representative in support of H.R. 1362. > > Take Action > > > > > > > If you no longer wish to receive e-mail from us, please click here. > > > > > > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: mailto:[log in to unmask] > In the body of the message put: signoff parkinsn > ---------------------------------------------- This mail sent through http://www.ukonline.net ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn