George: I'd have to be dragged, kicking and screaming all the way, to get MY
name and PD info on a state list! There's several states that offer such a
service, and I know of indiviuduals - lead to believe it would benefit them to
register for such a list - whose DRIVER'S LICENSE was IMMEDIATLY CANCELLED
within mere DAYS of registering!!! Believe me, this was no fluke either!!
They each fought terribly hard to get a reinstatement, as they weren't even
required to take a driving test before their license was pulled! And even
after proving that they WERE competant drivers and that despite having PD met
all their state's requirements most were STILL denied the right to drive!!
ME sign such a registry? NO WAY, JOSE!
Barb Mallut,
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From: PARKINSN: Parkinson's Disease - Information Exchange Network on behalf
of George Lussier
Sent: Wednesday, October 09, 1996 7:20 PM
To: Multiple recipients of list PARKINSN
Subject: PDers REGISTRATION ACT ARE YOU FOR OR AGAINST
Dear Reader,
I"m curious. Would you be for or against a State mandated registration of
all PDers, Such an effort will begin on 1/1/97 in the state of Nebraska.The
Nebraska plan calls for:
A "REGISTRY FOR PARKINSON'S DISEASE".IT NOTES THAT THE NEBRASKA PARKINSON
ACTION INFORMATION NETWORK HAS ACHIEVED LEGISLATION MANDATING THE
"REPORTING OF
PARKINSON'S DISEASE........THE PURPOSE OF THE REGISTRY IS TO PROVIDE A
CENTRAL DATA BANK ...........
PHYSICIANS WILL BE REQUIRED TO REPORT ALL PATIENTS DIAGNOSED WITH
PARKINSON DISEASE OR A RELATED MOVEMENT DISORDER AND PHARMACIES WILL REPORT
PATIENTS TAKING DRUGS COMMONLY PRESCRIBED FOR THE TREATMENT OF PARKINSON'S
DISEASE............PROTECTIONS HAVE BEEN BUILT INTO THE LEGISLATION TO
ENSURE ACCURACY OF REPORTS AND CONFIDENTIALITY OF INFORMATION.ACCESS TO
THE DATA WILL BE AVAILABLE TO ANY QUALIFIED RESEARCHER. THE REGISTRY WILL
CONTAIN THE INDIVIDUAL'S NAME, SOCIAL SECURITY NUMBER, DATE OF
BIRTH,GENDER, ADDRESS AT TIME OF DIAGNOSIS,CURRENT ADDRESS,PHYSICIAN,AND
IDENTIFICATION OF REPORTING SOURCES AS WELL AS ANY ADDITIONAL INFORMATION
THE DEPARTMENT DEMONSTRATES IS REASONABLE TO IMPLEMENT THE PARKINSON'S
DISEASE REGISTRY ACT".........THEY EVEN HAVE A PROVISION FOR
SELF-REPORTING!
RITA WEEKS FROM NEBRASKA POINTS OUT WITH REGARD TO ACCESS TO QUALIFIED
RESEARCHER:NAME,ADDRESS,ETC.IS NOT AVAILABLE TO RESEACHER.ONLY GENERAL
LOCATION OF PERSON WITH PD.....I.E.CITY OF LINCOLN,OR LANCASTER COUNTY AND
SHE ADDS THAT THE PURPOSE OF THE REGISTRY IS FOR EPIDEMIOLOGY STUDIES
TIME TO VOTE! ARE YOU FOR OR AGAINST SUCH MANDATED LEGISLATION IN YOUR
STATE??
GEORGE LUSSIER [[log in to unmask]]
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