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kholden

Bill focuses on Parkinson’s disease registry

3 posts in this topic

Bill focuses on Parkinson’s disease registry

 

 

 

 

 

 

 

 

By Antone Clark

 

Standard-Examiner correspondent

 

Thu, 03/07/2013 - 11:48pm

 

 

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SALT LAKE CITY — Legislation to create a Parkinson’s disease registry is one step closer to reality.

Members of the House voted unanimously Thursday to approve HCR8, sponsored by Rep. Stewart Barlow, R-Fruit Heights, to create a registry to study the prevalence of Parkinson’s.

The registry is being funded from private sources, Barlow said, adding he ran the bill as a resolution so the state would not be taking on the financial burden of the registry.

The measure now advances to the Senate for further consideration.

 

http://www.standard.net/stories/2013/03/07/bill-focuses-parkinson-s-disease-registry

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I'm certain I would NOT want to register my ailment with Big Brother. I can't see the benefit and certainly don't see the need. The state can find out prevalence without creating a registry. Count me as suspicious.

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That's a good point. However, currently, there is no accurate measure of just how many are affected by PD. Estimates range from 500,000 to 1.5 million in the US. Inaccuracy can affect research funding. I would like to see a registry, but with participants remaining anonymous.

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