[Jim091866]

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.

[Bob Dawson]

Jim.
right now we don't even know how many PWP there are! Because the cases are not even reported at all. Some say there are a million of us in USA alone, some say 1.5 million; some say soon will be 8 million in USA because of Baby Boomers getting old. Even the simple question of how many are we has no answer. One doctor from China says as their population ages they predict 30 million PWP in CHina.
i believe some people on this site are working with the government or something to put together a registry for PWP. When they get up later in the day they know more than me about it

[soccertese]

2014 insurance co.'s can't discriminate if obamacare reform survives.

states are now required to setup limited high risk pools but require 6months no insurance and pricey.

[olsen]

http://neurotalk.psychcentral.com/se...ional+registry

[Conductor71]

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.

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

[LindaH]

The PD / MS Registry bill HR 1632 / S.1273 hasn't been passed yet, but we're getting closer (185 co-sponsors in the House. )You can find out more about the Registry bill and send an email to your Senators and Representatives from the PAN web site at: http://www.parkinsonsaction.org/fede...es/pd-registry

[Jim091866]

Originally Posted by Conductor71

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

Laura, I've tried to get a kit, called with no response, sent email and was told that at this time they are not giving them out, it's been idled. What gives?????