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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