Re: PD News: PD Registry created in UK--ALSO IN U.S.!!!

[george pospisil <ntate@xxxxxxxxxxxxxxxx>]

Hi Janet,

I'm at home sick today with the flu, so my responses won't be as complete as
you may want with details. But the summary is that a couple of months ago I
started coordinating the creation of the Parkinson's Patient/Family Registry
on the web under Dr. John Marler, NINDS Associate Director for Clinical
Trials.  This is a cooperative venture involving all the major PWP advocacy
organizations in the country. Folks as far apart as California, Texas and
Florida have been working to create the site. I purchased the URL mentioned
(parkinsonsregistry.org) and we are working on approaches to the regulatory,
funding, and mechanism issues now.

Curt

----- Original Message -----
From: "janet paterson" <janet313@xxxxxxxxxxx>
To: <PARKINSN@xxxxxxxxxxxxxxxxxxxx>
Sent: Wednesday, March 29, 2000 5:34 PM
Subject: Re: PD News: PD Registry created in UK--ALSO IN U.S.!!!


> At 04:26 PM 2000/03/29 -0500, george pospisil <ntate@xxxxxxxxxxxxxxxx>
wrote:
> >Yes, a prototype registry is under construction at
Parkinsonsregistry.org.
> >Initially, at least, access will be through the several major patient
> >advocacy organizations and links through their web sites.  Last questions
> >are being worked on now, and it should be up and running shortly, though
> >human subjects/ consent regulations here are a major consideration that
> >needs to be addressed.  We're happy there is an interest. Yes, it should
> >help make a major contribution to research directions.  Curt Pospisil
>
> hi curt
> can you tell us more?
> who is 'we'?
> janet
>
> janet paterson
> 53 now / 41 dx / 37 onset
> a new voice: 
> 613 256 8340 PO Box 171 Almonte Ontario Canada K0A 1A0