The Parkinsons patients in Nebraska lobbied for and achieved establishment of
a "registry" database for Parkinsons patients in Nebraska about 8 years ago.
The database was established and maintained by the state health
dept.......and information available to any qualified established researcher
scientist in the world. The availability of this "registry" was reported to
neurology professionals. Establishment of the registry was carefully
coordinated with university medical center neurology researchers.
During the time period to present I understand that only 1 research group
requested information from the registry.
Cost of maintaining the registry on an annual basis was estimated/budgeted in
the approximately $25,000 range. Actual costs I understand were more in the
$10,000.
Recent budget crisis/cuts in the state government will probably result in
updating and annual maintenance of this database being abandoned unless a
researcher has funding for this service in form of independent grant support.
I did post several items to this list at the time we were establishing the
database in this state. I will also say that the PARKINSN list members at
the time soundly rejected the establishment of said database. Files were to
include social security # so that duplicate entries would not be made for the
same PWP (hospitals, pharmacy, and doctor reporting info on patients). Names
and addresses would not be available to anyone accessing material from the
database.....only demographics such as age, county of residence, sex?......
Much concern was expressed by list members re invasion of privacy,
availabilty of info to employers, insurance co, etc.....but primarily "big
brother is watching and aware".
Perhaps the medical\research community is not yet ready for this information.
Perhaps in the overall scheme of things the medical/research community
acknowledges that research dollars are better spent delving into the
mechanics of the cell/brain. Funding for a national registry was included in
the Udall bill.....and so far as I know this was not pursued by the research
community.
Quite frankly, knowing how many others were struggling with Parkinsons
symptoms at age 30 would not change my status or challenges today......not
yesterday....nor tomorrow.
Rita Weeks
symptomatic prior to age 30, diagnosed age 44, currently 58
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