 |
 |
[log in to unmask] wrote: > > Hi > > Attempts to gather information on PWP is admirable..... > > Push to get others to gather information about us is admirable.... > > I do recall taking quite a beating on this list a couple of years ago when the > Nebraska registry was established by the Unicameral.......why?......because of > rights of privacy for patients. How are you going to keep tabs (without > double counting some folks) without identifying patients........or has that > issue been settled and I missed it somewhere along the line? > > Where will the funding come from for this count? Are you willing to forgo > research dollars that a pharmaceutical co might spend on research on > medication for a registry? Are you willing to spend Udall $$'s for the head > count? Are you willing to have this database established now on a national > basis? I think that a national, perhaps someday a global, registry of PWP is one of the most valuable research projects that could be done to help us all. It looks like the only way to settle questions of hereditary, environmental, and geographic origins of PD with any confidence. As for some PWP concerns for privacy loss which might result in social, insurance, or employment problems, there already have been many small surveys which seem to have overcome that objection. All the physician needs to do is omit identification of his reported cases. If you can't trust your own doctor to do that, it's a problem between you and him that already goes beyond any possible harm done by a survey report. As for costs, remember that any doctor's time is valuable, and even the few minutes to fill out an annual form should be paid for. As a WAG, suppose that $10 per report is adequate to produce reasonable cooperation and compliance. Reports on progression of a million PWP would then total $10 million per year, not such a bad bargain. Cheers, Joe -- J. R. Bruman (818) 789-3694 3527 Cody Road Sherman Oaks, CA 91403-5013