Hi Linda and Marjorie and all,
The state of Nebraska was the first to initiate a Parkinson's Registry...
http://www.hhs.state.ne.us/new/parkdis.htm  now appears as a dead link.
The tel. # associated with that URL was 402-471-6585
Maybe a Nebraskan can check that out and report....

They do have rules... see Chapter 17 at:
http://www.hhs.state.ne.us/reg/t174.htm
http://www.nol.org/legislative/statutes/R/81/06/R8106064.html

See also: Providing better treatment for patients with Parkinson's disease: The
        creation of a Parkinson's Disease Register
http://www.parkinsonsdisease.com/lwp/LWP13.HTM

The Mulligan Foundation  - Enter your information in the Parkinson's Registry
http://www2.parkinsons.org/mulligan/registry/

cheers .......... murray

 On 27 Jul 2000, at 8:40, Linda J Herman wrote:

> Marjorie L. Moorefield  wrote:
> >Since there isn't a registry of how many people contact PD each day or
> >year, >in what States,  their race ,  age , occupation, etc.,
> >then the only thing we can study is death.
>
> Marjorie,
> Your posting reminded me about list messages this past spring about a Web
> based PD registry under development. It was to be a joint project of
> NINDS, Parkinson's organizations and academic researchers. The URL given
> at that time was : Parkinsonsregistry.org.  I had bookmarked it and just
> tried it again, but it is still be unavailable. I wonder the registry is
> still in the works. It could help provide valuable information on the
> causes of PD.   DOes anyone know the status of this project? Is it a
> funding problem?
>
> Also wanted to mention that the Department of Defense's Neurotoxin
> Exposure Treatment Research Program is conducting research on the
> mechanisms and treatments of neurodegenerative diseases -- specifically
> on PD, and on the influence of environmental toxins. Funding for this
> research is from the Defense Dept. and is separarte from the NIH funding
> for PD research. They are requesting increased funding ($50 million) for
> FY 2001 to continue and expand the research.
>     At the Michael J. Fox Forum in June, a number of DOD funded
> researchers gave excellent presentations.  I'm trying to read my
> illegible notes  --- they are investigating areas such as gene therapy to
> restore nerve cell functioning, immunophilin therapy to prevent cell
> death, neurotoxicity of insecticides, and long term effects of neurotoxin
> exposure on veterans, especially  Gulf War vets - many of whom are
> suffering from neurological problems such as tremor, muscle weakness,
> etc. They reported that one of their studies showed that exposure to one
> type of pesticide did affect dopamine uptake in the brain, and are now
> investigating the effects of exposure to multiple pesticides.  Aslo
> stated that an annual summary of the project is forthcoming.
>      What we can do? -- Contact your Representatives and Senators to
> coontinue and increase funding for the Department of Defense's NETRP
> research. There should be more info. on the PAN or MJF Foundation web
> sites.
>
> Linda Herman


[log in to unmask]