A proposal for the advocate groups
 

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"? :D

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.

registry
 

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

Registry and Pharmacies
 

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!

It doesn't have to be that difficult
 

In m former life I was involved with what are known as geographic information systems which are essentially coloring maps to reflect datasets. On steroids. :D

Because of the spread of the 9/11 emergency response stuff, there are hundreds of training programs for this at the community college level. It should be possible to find a class to take it on as a project and it shouldn't take them over six weeks. The hard part is getting the datasets.

Every big pharmacy chain has them. They have to track that info very closely so that they don't end up with a closet full of requip at their Peoria store. Mailorder can be ignored since it would apply equally across the uS. It would be a little tricky to account for population movements, but that's what the students would do.
-Rick

A basic assumption here...
 

...seems to be that there is universal access to health care and that prescriptions written equals prescriptions filled. Now, :winky: I know that the better cruise ships only stop at places where you see happy people, but gee, guys, uh, there's a large chunk of statistics that would have to be assumed, in which case why bother with pharmacy records at all? My guess at 4 am is that this is precisely why we need registries--because there's just no way to extrapolate the data. But of course I could be off track with my guess.

Didn't our colleagues in California succeed in getting one started there? What was on their "ask" list and what background did they cite? I'm expecting that Carey will know something about this.

Jaye

Several reasons we don't have one
 

Another reason given. is that there are many young onset out there who either don't know, won't tell, may be untreated, etc.

It's an issue that has not been accomplished yet - evey issue needs a champion, if it can ever be done satisfactorily. PD is showing up in a lot of baby boomers and the younger generations seem to be getting it at even younger ages Another Braak concept that makes you stop and think - life is dynamlc, everything , including our bodies, is constantly changing.

p

I'm inclined to doubt the value of regional studies or registries when it comes to statistical studies of PD. My thinking is that PD is just too elusive. Until there is a precise method for diagnosing the disease, statistical studies would likely suffer from validity problems.

I've read that PD can be determined by autopsy. Of those who have been diagnosed with PD and who have been examined post mortem for the presence of the disease, only 70 to 80 percent have been confirmed to actually have had the disease. Given that high a rate of false-positives, I think we can expect a similarly high rate of false-negatives as well as a large group who were never evaluated for PD at all. So the error of measurement is huge. This problem alone would generate suspicion as to the validity of many (but not necessarily all) study results based on such data.

This doesn't mean I think a registry is a bad idea. In fact, I like it. But I like it for other reasons that go beyond this topic.

Karl