I had this thought today. Not meaning to discourage anyone from doing it - just another factor - The registry would probably need to go back at least one generation. Our generation doesn't stay put nearly as much as our parents'. We are at the age where it will look like an epidemic - and you won't be able to trace us as solidly from anywhere?

Have a nice day....geez there are so many things --but communications are improving all around. The power of just a few letters - and not to congress. but to business, NIH, FDA, and PD orgs

shutting up, or maybe its down...where is AJ when you really need her?
paula

Information on the Nebraska registry can be found here: http://www.hhs.state.ne.us/ced/parkinsons/index.htm

And here is the info on the California registry: http://www.thepi.org/site/parkinson/section.php?id=91

The Nebraska registry is mandatory (physicians must report suspected cases and then confirm them yes or no) and state-wide. While good for Nebraska, it is thought to not have much application beyond because Nebraska's population is small and its overall profile does not feature much diversity.

The California registry is under the auspices of the Parkinson's Institute in Sunnyvale (Bill Langston's organization). They have been cleared by the state legislature to begin to collect data, but they lack either funding or will power (or both), so I think it is stalled for the time being (somebody help me out here). The pilot project will include just some of California's counties, but given its size and diversity, the results will be seen as more widely applicable than Nebraska's. Here is information from their website:

"The pilot program, which will begin in 2007 and last two years, will develop and implement procedures for data collection on all PD cases within several targetedCalifornia counties. The regions will be selected based on a representative diversity with regard to race/ethnicity, socioeconomic status, and residence as well as the availability of other local research databases. Assessment of the Pilot Project’s data quality, costs and challenges will be used in planning a full statewide registry.

The pilot project has received funding from the Michael J. Fox Foundation, the National Institute of Environmental Health Sciences and Department of Defense Neurotoxin Exposure Treatment Research Program (NETRP)."