I want to first make perfectly clear that it is NOT my intent to discredit or
reduce support for the Udall Bill. I offer this information only in the
debate re: reaction to the NE Parkinson's Registry on the Parkinsn Listserv.
Most comments have opposed the registry. Legislation established specific
guidelines as to who has access to the database in NE..............Most who
voice objection do so for fear the state agency may not adhere to the
legislation as it was enacted......rights to privacy, insured by the
legislation, may be jeopardized.
What are your privacy and protection rights with this/these database(s)?
(Section B (iv). Will you know if your MD submits information to a medical
center for this database? Is there a need for you to be informed ?
I copied the attached information from Jim Cordy's posting of the official
text of the NIH Revitalization Bill S. 1897.
"Here's the part that applies to Parkinson's:. . .
(Section A omitted to save space in this message)
``(B) Discretionary requirements.--With respect to
Parkinson's, each center assisted under this subsection
may--
``(i) conduct training programs for
scientists and health professionals;
``(ii) conduct programs to provide
information and continuing education to health
professionals;
``(iii) conduct programs for the
dissemination of information to the public;
``(iv) separately or in collaboration with
other centers, establish a nationwide data
system derived from patient populations with
Parkinson's, and where possible, comparing
relevant data involving general populations;"
and then it goes on to (v) separately or in collaboration establish a
Parkinson information clearing house, etc.
Rita Weeks
