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Thanks Rita, I remember it was cussed and discussed on this list. However, I don't think that is what I'd be looking for. I'd like to be able to trace it to a common denominator, such as farm chemicals, well water, drinking non pasturized milk in formative years, etc. You know all the OTHER things which a registry never asks. Even medications wouldn't be needed. Not interested in SS#, but would have to have age now, and age at onset, if we were ever going to make heads or tails of the information. So much information just ends up being statistics which is of no earthly use to anyone. just me, Marjorie At 11:18 AM 07/27/2000 -0400, you wrote: >Nebraska PD Registry was established and funded by the Unicameral >(legislature). >The Registry is maintained by the State Department of Health. The >information in the registry is available only to bonafide researchers for >bonafide research projects. No personal names/ identification is provided to >the researcher. Reporting is to be done by hospitals, physicians and >pharmacies within the state (in order that those who order drugs from out of >state or see physicians out of state could be counted). > >The ruckus that was raised on this list previously was because Social >Security # was included in the information the reporting agencies had to >provide (this provided so that the same individual would not be counted >multiple times in the registry). Many on the list felt that privacy would be >compromised. The format for the questions/answers on the registry was >devised by/or in cooperation with neurologists treating PD patients. > >I do not know how well the registry is being maintained. I will admit that I >have my doubts. I have NEVER been asked by my pharmacist, physician or >hospital to provide any of the information which I understood was to be >requested on the registry format.......such as where I grew up, where I lived >previously, use of chemicals, well or community water source etc..... > >Rita Weeks 55/10 >Lincoln, NE