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At 02:51 PM 3/27/98 -0800, you wrote: >So, I don't agree that the risks of a registry outweigh the gains. >Cheers, >Joe Hello Joe, Art, et al, A couple of days ago I tried to contact Rita Weeks, who so valiantly= defended Nebraska's legislative move to establish a PD registry. I am forever= foraging the internet for statistical info that would add more "teeth" to=A0 our= argument for FULL funding of the Udall Act. It seems that all disease groups, except PD, have current, hard hitting data backing up their funding demands.=20 I thought that if I could get actual data from Nebraska, it may be possible= to apply it on a national level.=A0 Unfortunately, Rita's mailbox was full and= my email was returned, <On 009/004/96, Rita Weeks wrote:=20 Subject: Parkinson's Registry=20 Nebraska Unicameral (we have only one house in our state legislature)= tonight passed LB 496 to establish a registry for Parkinson's Disease and other movement disorders in the state of Nebraska.=A0 This will be maintained by= the State Health Dept. The Parkinson's community in Nebraska has put much effort into educating the state legislators during the past two years. After the governors signature, Nebraska will have a registry to facilitate=20 epidemiological studies of Parkinson's patients.> I looked up the phone number of the NE Health Department, Health Systems Planning and Evaluation Division:=A0 402-471-2337.=A0 It sounds like this=A0= may be the right department to call? Is there someone who lives in, or near= Lincoln, NE and has time to check if a report has been generated containing stat info relating to incidence and cost? There are the two major areas that impress politicians: 1/=A0 what % of the population is diagnosed with PD; what is the breakdown by age, sex, etc,= and=A0 what is the projected growth of the population, with special consideration given to the "baby boomers" , and 2/ how much is the current related cost and what is the projected cost per annum for the next 25 years.=A0=20 Ideas and help is welcomed! Margaret [log in to unmask] DOB: 1941/Dx: 1980/Cured:ASAP Slogans wont do it/Hard work will