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On 10/09/96 22:20:05 you wrote:
>
>    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.

George:

Before my husband or I can answer your question we need more information.

1. What is the real purpose of this law? Why is it considered necessary to
mandate the sort of epidemiological data bank that is usually reserved for
medical problems that are a threat to public health? Isn't it is the sort of
thing that is usually reserved for infectious diseases?

2. Who and/or what group initated this measure and what is their purpose?

3. What is meant by a "Qualified Researcher" who would have access to the
data? If this term is loosely applied, would this jeopardize driving
privileges or insurance? Does this legislation clearly define this term?

On its face, this legislation certainly sounds ominous, and seems to be yet
another invasion of our privacy. There are PWPs who do not want their
employers, or others to know about their problem, for example.

If, on the other hand, gathering information on the incidence of PD, the age
of onset, sex, and other stats, and the cost of medications used, will
encourage more research being funded and carried out, We would certainly be
for it.

I'm surprised this comes from Nebraska. This sort of thing usually seems to
originate out here in California :-)

Martha Rohrer.

>
THE PURPOSE OF THE REGISTRY IS TO PROVIDE A CENTRAL DATA BANK ...........
>
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
>
>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
>SHE ADDS THAT THE PURPOSE OF THE REGISTRY IS FOR EPIDEMIOLOGY STUDIES
>
>GEORGE LUSSIER [[log in to unmask]]
>
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>
>