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Originally Posted by Jim0918
Recently the media has mentioned that there is a national registry for breast cancer patients. Would that be beneficial to PD. I've got mixed thoughts, privacy-once you are on it, you're ON IT. Try getting insurance at that new job or life insurance then-ha. Anyone else. Seems like this may be putting the cart before the horse if there isn't some sort of legislative guarding of the information. It could really speed research if people started talking to each other, targeting treatments, tracking results. WOW that sounds great. Now its time to wake up from this dream.
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Jim,
Congress recently passed a law establishing a National Registry for both PWP and MS. It should help immensely to see patterns and make some connections on etiology or other variable that may serve as PD triggers. I believe that Parkinson Action Network played a key role in establishing this legislature.
23andMe is a means for also sharing data. If you have not gotten your "Spit Kit", please get to their web site to take advantage of highly discounted genomic analysis for PWP - it is for "normal" folks like $400 and for us only $25. It is well worth it!
Laura