 |
 |
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" <[log in to unmask]> To: <[log in to unmask]> 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 <[log in to unmask]> 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: http://www.geocities.com/janet313/ > 613 256 8340 PO Box 171 Almonte Ontario Canada K0A 1A0