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Hi Jim, I remember you from the earlier years of the Parkinsn list. Welcome back and congratulations on earning your doctorate. In the U.S. too, we don't know how many people have PD -- its all just estimates. Its important to know for sure to be able to measure the impact of the disease and to learn about environmental and other risk factors. There is a bill that's been introduced in the U.S. Congress, The National MS and Parkinson's Disease Registries Act, H.R. 1362. It's passage is part of the Parkinson's Action Network's agenda for 2009. ""The National MS and Parkinson’s Disease Registries Act will create, for the first time, separate, permanent, and coordinated MS and Parkinson’s disease national registries. The registries will rely upon existing databases, such as Medicare, VA, state registries, and private databases, to determine the incidence and prevalence of MS and Parkinson’s disease.... The information collected through the registries will provide a foundation for evaluating and understanding many factors such as geographic clusters of diagnoses, variances in the gender ratio, disease burden, and changes in health care practices. In addition, the legislation will give us the ability to examine changes over time, such as an increasing rate of young-onset Parkinson’s disease or a decreasing proportion of people living with MS in the southeastern United States. The MS and Parkinson’s registries may help uncover and inform promising areas of research such as genetic and environmental risk factors, or the resulting data could be used to provide consistency and coordination in addressing treatment of disease nationwide." For more about the registry and the bill ,see http://www.parkinsonsaction.org/The-National-MS-and-Parkinson-s-Disease-Registries-Act.html Linda Herman www.pdpipeline.org ---------- Original Message ---------- From: Jim Slattery <[log in to unmask]> To: [log in to unmask] Subject: Find a fix Date: Mon, 6 Apr 2009 16:42:52 +1000 From: <[log in to unmask]> > hi Doc - what can we do to help you find a fix? Well, a good start might be to try to convince legislators and the medical fraternity to seek more accutae data, and not to just use the same ol' same ol' !! There are those who think accurate figures for prevalence and incidence are of no importance, but how else can we demonstrate the enormity of the problem, and how can we keep abreast of an increase in the numbers affected? ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn