Re: PDers REGISTRATION ACT ARE YOU FOR OR AGAINST

[Jim Hyland <jhyland@xxxxxxxxxxxxxxxxx>]

At 03:24 PM 10/10/96 -0400, Martha Rohrer wrote to George Lussier:

>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?

Quoted from the law: "The purpose of the registry is to provide a central
data bank of accurate, historical and  current  information  for  research
purposes.    The Parkinson's  Disease  Registry  Act  will  provide for
screening and collecting patient and family data that may be useful in
detecting the  incidence  of  and possible  risk  factors  concerning
Parkinson's  disease  and related movement disorders.  The act will also aid
in planning for health care requirements  and education needs."    Who is to
say what the "real" purpose of the law might be?
>

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

The Parkinson Disease Registry Act was passed by the Nebraska legislators on
April 9th 1996 and signed into law by Governor Nelson.   It goes into effect
January 1, 1997.    I am inherently cynical enough to imagine that the
insurance lobby exerted the most pressure to bring this legislation about,
but I don't know that.    In six weeks it won't much matter who originally
initiated the matter.

____________________________________________________________-
>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?
>
Quoted from the law:  "(2) Approved researcher means an individual or entity
who is approved by  the  department  in accordance with section 81-666 to
obtain access to data contained in the Parkinson's  Disease  Registry  to
assist  in  scientific  or medical research for the prevention, cure, or
control of Parkinson's disease;"



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