Something occurred to me the other day that could yield some important data at very little cost if the big pharmacies would help out.

We have very little in the way of data about the geographic data regarding how PD is distributed around the world. But, at least in the US, that data is available in the form of sales of Sinemet and the dopamine agonists! The problem is that it is in the computers of places like Walgreen's and CVS pharmacies.

That data would be a gold mine. Not only could they tell you how much was sold in Topeka, they could tell you how much was sold in a given neighborhood on a particular day of the year between the hours of 1:00 AM and 1:05 AM! Talk about detail.

With some correction for population mobility and such, we could have some extraordinary data to plot against everything from wind patterns to milk consumption.

Paula et al, do you know anyone with enough clout? Maybe with the initials "MJF"?

Rick - getting info from pharmacies is something that has come up before; can't recall why it hasn't been acted upon; will revisit the issue. I think it's a good idea.

We reported on how CA got their registry passed here:

http://grassrootsconnection.com/grc_...trysuccess.htm

I think one other state has a registry - Nebraska???

Carey - I think it was Bill Bell we talked to about it and I also forget the reason. Can you ask him?

Rick many think we badly need a registry.

paula

a probem with getting the information from the pharmacies, would be the accuracy of the drug being rx'ed for just pd.

I have long thought a national PD registry is needed. the establishment of an ALS national registry was recently passed by the congress.

I also think a registry is important. It's a bit tricky, especially because the kind of registry that really makes a difference is mandatory - that brings up all sorts of privacy issues. But if they've done it for other diseases, I don't know why they can't do it for PD.

Regarding Pharmacies - I just checked with Bill Bell, and he said he had pursued the idea through to an organization called the National Drug Code (NDC http://www.fda.gov/cder/ndc/ ), that tracks all perscriptions in the US. There would have to be some statistical work done around mailorder stuff, etc. to arrive at an estimate.

Apparently it is something that can be done - it's just terribly expensive (on Bill's budget, anyway), at least on the order of a million dollars - a drop in the bucket for the feds!