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PD Registry-Some Offhand Thoughts (15 Oct 1996): I must admit, I was surprised at the number of objectors to a PD registry; I guess it shows I wouldn't be a successful politician. -REWARDS: -Better knowledge of how many PWP there are, underscoring its importance for research funding and other attention. -Uncover factors possibly related to PD, which may give insight about how to avoid it. -Better knowledge of symptoms and progression, leading to improved diagnosis and/or treatment. -Wider appreciation of PD among health professionals and business providers of goods and services for PWP. -Increased awareness by the general public. -PENALTIES: -Costs of collecting, preserving, and disseminating the data. -Invasion of privacy, leading to possible abuse by insurers, employers, lenders, government authorities, etc. -Yet another government intrusion (if you worry about Big Brother) -COMMENTS: The rewards of a PD registry are self-evident, but the penalties may not be. The principal objectors to the Nebraska registry seem to be the doctors and pharmacists who do the reporting. I noted a while ago that perhaps the answer is to pay them a fee for each report. If the doctor's time is worth $100 an hour, and you pay him, say, $10 per report, the national cost of 50,000 new reports a year would be $500,000, not counting administration. Nothing is free, and that money would have to be diverted from other purposes. As for the privacy issue, some identification will always be needed, to prevent duplication (just as in voter registration). No protection of privacy can be absolute, so it boils down to how good is it, and what is the risk to the PWP if it is breached. The PWP who worry about this may also be thinking, I already know I have PD, and it's too late for long-term research to stop its progression, so what good is a PD registry to me personally? On the other hand, PD registry or no, you can't conceal PD forever from a suspicious employer, insurer, or official, and they don't even have to tell you of their suspicion; so what do you stand to lose? Cheers, Joe J. R. Bruman (818) 789-3694 3527 Cody Road Sherman Oaks CA 91403