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Re: PD News: PD Registry created in UK--ALSO IN U.S.!!!
On 29 Mar 00 at 17:34, janet paterson wrote: > 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 > Hi Janet, The URL is... but... just a sundial so far... I would think an interactive form could allow individuals to respond on-line to a *survey / registry*. When enough data is collected and analysed, some reports or graphs could be posted... as you so well know this medium has infinite possibilities.... All the best ............... murray Murray_Charters@xxxxxxxxx
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