Quote:
Originally Posted by LindaH
Jean asked a good question: "'how does this compare with the registry at the Muhammad Ali Center (an npf center of excellence)? "
Are we going to end up with as many different registeries as PD organizations?
I think it would be more useful for all the orgs to work together with PAN to pass The National MS and Parkinson's Disease Registries Act. see:
http://capwiz.com/pan/issues/bills/?bill=13110561 |
Excellent question, Linda. Unfortunately, I think your assumption is correct; especially if we have two organizations with their own registries...my jaded self wants to believe it's for the common good, but I suspect there may be some data collection going on to help better organize the organizations- I know that there is no profit motive, but collecting data does help them get a demographic profile of their constituents.
I've been curious about what is going on at the National Institute of Health PD-wise and stumbled upon this. I think this is the model we are looking for. It's the Parkinson Disease Data and Organizing Center (PD-DOC). It looks like a national clearinghouse for data on PD funded by the NIH and housed/managed by the University of Rochester. I'm going to explore even more, but this seems just what we need!?! So how does the National Registry just passed in legislation differ?
Laura
http://www.pd-doc.org/AboutPDDOC/Mis...2/Default.aspx