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Message-ID: <[log in to unmask]> Date: Thu, 15 Oct 1998 10:43:00 -0700 From: "J. R. Bruman" <[log in to unmask]> Reply-To: [log in to unmask] X-Mailer: Mozilla 3.0C-NC320 (Win95; U) MIME-Version: 1.0 To: Parkinson's Information Exchange <[log in to unmask]> Subject: Re: News-Brain surgery helps severe Parkinson's References: <000001bdf834$a9f167c0$f560ba89@peter> Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit Peter Kidd wrote: > I'd like to echo Bob Dolezal's comment about the contributions of Judith > (and janet and many others who post important news stories on the list). > On Bob's questions regarding the 7 million figure (and the usual age of > diagnosis), this only points up a real problem facing Parkinson's and our > efforts to fund research. The simple fact is that we don't really know how > many people have Parkinson's. Our numbers are getting a little better, First, add my thanks for what I know is a very tedious, time-eating task of searching for latest news about PD. Second, re Peter's remark: I've pointed out here repeatedly that one of the most important neglected PD research projects is to discover just who has PD. That will reveal a lot about when symptoms appear, bias due to ancestry, occupation, environment, geography, progression, and so forth. But it can only be done by means of a permanent registry, not just another finger-in-the-wind survey. And the problems of setting up a registry are multiple: It needs to be done by government, which bothers many; it needs international cooperation, which bothers more; it needs elaborate safeguards to protect individual privacy; it would cost a lot (doctors and pharmacists need to be paid for their time); and the reward to researchers is meager (no drug patent bonanzas, no Nobels, no glamorous laboratories or institutions). So, I should guess it would be very low priority for the $100 million a year that NIH is supposed to spend, and it looks like we'll just have to do without for now. Cheers, Joe -- J. R. Bruman (818) 789-3694 3527 Cody Road Sherman Oaks, CA 91403-5013