[olsen]

need advice about starting a campaign to institute a national Parkinson's registry. I know the Ali foundation has begun a self-reporting registry, though we have been reluctant to enter all my husabnd's medical info into the system because of the warnings that the site is not secure. and does anyone know if they share that information with all researchers/physicians--or just those with whom they have a relationship?
Has anyone here worked on obtaining registries in individual states--ie california?
would appreciate any help, advice, etc.
seems to me establishing a national--(dare I dream--even international) registry for parkinson's will help tremendously in all aspects of PD research...
thanks, madelyn

[jeanb]

Madelyn,

To my knowledge, Nebraska is the only state with a state-wide registry for people with PD. Privacy of those listed in the registry is very carefully guarded.

I know one of the people there who worked to make it happen. If you send me a private message, i'll give you that contact info.

Jean

[pegleg]

The Parkinson's Action Network (PAN) in Washington, DC has a piece of legislation they have been working on for about a year. It is called the Udall Act Amendments, and a part of the focus is on a registry.

This is the wording:
Determine how many Americans are battling Parkinson's disease and why. By determining common traits such as age, occupation, and population clusters, NIH can better target critical research funds towards prevention. Parkinson’s

See for details:
http://www.parkinsonsaction.org/content/view/106/203/

This registry is a grave need in order for us to get proper funding. Maybe we can all put our support behind this effort.

Peggy

[jeanb]

Peg,

I agree completely. For 10 years I've been hearing:

...there are 1-1.5 million people in the US with Parkinson's...

the number never changes, and you KNOW with boomers like me aging, they will join the ranks of people with Parkinson's.

we need a nationwide registry!!

[olsen]

jean and peg, thanks for the info--for our friends from other countries--does anyone have a parkinson's registry??? I thhink the ALS groups have a bill in congress at present to establish a national ALS registry (have not heard of its passing, anyway)....

[GregW1]

AJ and I helped write and get enacted a mandatory PD registry for California. It is begining with a pilot program in three counties chosen for their demographic resemblence to the rest of the country.

The program is not supported by state funding, but has received funding for the trial program from the NIEHS and from the MJFF. Having moved to KY I am not certain of the current status of the pilot program. For additional information about the program, you can PM me and I will give you the email addresses for the program's prime author, who hatched the plan during a break in the 2003 PAN Forum, and for a SO CAL PD activist who is the best source for all things going on in California, and who sends out a what's happening in Cal email report every month.

Also, re: the Nebraska registry, the best contact I can think of, who helped get the program going and is still involved, is Rita Weeks. Again, you can PM me for her email contact address if you don't have it.

Greg