Statistics
 

Does any one know where to find reliable statistics on PD? Number diagnosed each year, number with it, etc. My searches are all over the place.

none exist - true story. One of the many compelling reasons for a mandatory PD registry.

Thanks! I was curious if that was the case.

global shortage of data...........
 

If you have any luck on this I would love to know, I have been trying to find some global data, and have come up with a considerable amount of very little!

This is the best I could find
A Global View Spring 2008 from NPF

http://www.parkinson.org/Document.Doc?id=447

That's a great find!

Global statistics
 

The EPDA (European Parkinson's Disease Association) worked with WHO (World Health Organization) and came up with a figur e of 6.3 million globally.
(see the Parkinson's Global Declaration ) http://www.epda.eu.com/globalDeclaration/default.asp

The more conservative U.S. says (but has nothing to back it up) that there are either "over a million" or 1.5 million and 4 million worldwide. PAN is working on a bill to work with the MS org to create a mandatory registry. The Ali Center in Arizonia attempted to count heads a while back through a survey, but it failed miserably.

I believe we will have to start somewhere at a point in time and make doctors report to the CDC or somewhere as patients are diagnosed to get a reliable, valid number (which could take forever)! Or maybe this could be done through counting prescriptions filled for PD meds, which would require doctors to put a diagnosis on every Rx written. When it is filled, the pharmacist would send in the count for each dx. I give the responsibility to pharmacists because doctors are already way too busy to see t he significance of doing this. They have to write down a dx for insurance anyway.

I don't know, but this again seems to have slipped through the cracks. I think it is because so many fingers are in the pie (too many orgs), which fractures our direction.

Peggy

ALS national registry
 

Information from ALS foundation sites regarding the national registry act that was signed into law. There is mention of several pilot projects to determine the best way to implement collecting data in an efficient and productive way (wonder what these are and if there are any results yet):
http://www.alsa.org/policy/article.c...TOKEN=68144428

The ALS Association
National ALS Registry Efforts Underway
The ALS Association is pleased to announce that the Centers for Disease Control and Prevention/Agency for Toxic Substances and Disease Registry (CDC/ATSDR) has launched three pilot projects that will be used to guide the creation of a national ALS registry. The pilot projects, which are underway in Georgia, Minnesota and South Carolina, will examine the most effective and efficient ways to identify people with ALS and obtain and share data.

Since 2004, The ALS Association has pursued a comprehensive strategy to establish a national ALS registry. Significant progress has been achieved in this effort as Congress, the President and the CDC/ATSDR are collaborating with The Association and the ALS community to advance this important priority and to take the first tangible steps to evaluate the science of a national ALS registry.

http://webaz.alsa.org/site/DocServer...df?docID=51341

Congress Enacts the ALS Registry Act, Appropriates $10 Million for Registry Projects
Thanks to the outreach of people with ALS and ALS Association advocates across the
country, The ALS Association has partnered with Congress to enact the ALS Registry Act
(Public Law 110‐373). Signed into law in October, 2008 the legislation provides the Centers
for Disease Control and Prevention (CDC) with the authorization and guidance necessary to
create a national ALS registry. At the same time, The Association has worked with Congress
to secure nearly $10 million in funding for the registry over the past four years (2006‐2009).
This funding has enabled the CDC to conduct four pilot projects to determine the most
effective and efficient ways to accurately identify ALS cases in the United States and to share
information. Importantly, because The ALS Association pursued funding for the registry
even before enactment of the ALS Registry Act, the CDC will be able to implement the
National ALS Registry much sooner than otherwise would have been possible.

olsen
 

So,, now we know that it CAN be done! Thanks.

Peggy

And somebody took that 1.5 million and worked out the time factor of one year and came up with these stats:

"There will be 60,000 people diagnosed within the next year; that's one every 9 minutes." (probably meaningless since we don't really have any proof of the number!)