This is a multi-part message in MIME format. --part0_897571045_boundary Content-ID: <[log in to unmask]> Content-type: text/plain; charset=US-ASCII To Listserv Friends, from Robin Elliott (exec, dir. PDF): I recently sent a note to Ms. Herman on her interesting and thoughtful postings on "PWP numbers." She thought my comment might merit wider viewing. Here t'is ... --part0_897571045_boundary Content-ID: <[log in to unmask]> Content-type: text/plain; name="CSTST981" Content-transfer-encoding: quoted-printable Content-disposition: inline Subj:=09Numbers Date:=0998-06-11 07:59:10 EDT From:=09PDF CPMC To:[log in to unmask] CC:=09mtuchman@EARTHLI, [log in to unmask], HOFFHEIMER If you will e-mail me your mailing address, I will be happy to send you a copy of a cost study (of PD) we recently commissioned at the PDF. It included a review of 19 epidemiological studies of incidence and prevalan= ce. My advice: don't sweat it. None of the available studies are projectible= to the entire US (several are from overseas) and those that are the most projectible show numbers from the low- to mid- hundreds of thousands. NI= H estimates about a half million and the drug companies (who have a very special interest in knowing these numbers) have a similar estimate. Beca= use we know that there is a high misdiagnosis rate in PD patients (30 percent= ?) and because there are probably tens of thousands out there in the hinterl= ands who never present for a diagnosis, we believe we are entitled to suggest = a higher end to the range--hence the common usage at the PDF: "as many as o= ne million." We also need to present a more-or-less unanimous figure politically, and = the "one million" is pretty well stuck in the public perception. I would cou= nsel strongly against going higher ("one and a half" ... "two million or more"= ... I have seen both on the Internet recently). Exaggeration too far beyond known facts and scientific consensus isn't good PR. For those who want t= he numbers, those we have (in my view) are already quite powerful enough. I was interested in your comments and am sharing them with the fellow who= did our desk research on the cost study. Good and provocative thinking. - robin elliott, executive director, Parkinson's Disease Foundation --part0_897571045_boundary--