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Dear Dolores, You are certainly up on your registry info. I helped draft the California registry law, although Mark Seigel of So. Cal. deserves most of the credit. I can tell you that the biggest obstacle to passing a national mandatory registry, which I agree is desperately needed, will be patient privacy concerns. We flogged the Caslifornia bill at support group after support group, and the first and sometimes the only thing we heard about was "I don't want some govt agency snooping into my medical records." This even after we told them that California has both a mandatory cancer registry and a mandatory birth defects registry and there hasn't been an improper disclosure of personal info since the initiation of the cancer registry over 40 years ago. I think we got it passed because not enough PD patients knew about it to oppose it - lol. Dr. Bill Langston (Parkinson's Institute, MJJFF Scientific Board) says a mandatory registry is the best way by far to nail down the causes and then find a cure for PD. But people with PD don't feel the same urgency as people diagnosed with cancer, and by the time they are desperate they are generally too disabled to be very active advocates for something like a registry (with some notable exceptions right on this listsrve). I have moved to Kentucky, but I don't think the Cal registry is really moving forward at this time. I do think their is serious discussion about a national registry both in and out of govt agencies. CDC helped fund the CAL registry. For what its worth, Greg Wasson Dolores Buente <[log in to unmask]> wrote: Dear Mackenzie, My reaction to your inquiry is to instinctively suggest that you add a third choice to your poll ( I know, I am not following the rules. It's just the maverick in me). I'm referring to a national data base to be maintained by either the NIH, the Dept. of Health & Human Services or the Center for Disease Control. It would require that (with their consent) all persons diagnosed with Parkinson's or a Parkinson's Plus syndrome be registered with this base through their physician's office. The information compiled by this base would include a thorough patient history in respect to their familial connection to Parkinson's (genetic background) and their exposures to various toxins, bacterial/viral infections, traumatic injuries to the head, etc. (environmental background.) I feel that with enough data from enough patients nationwide, we could pin down a specific cause or causes for these disorders. This information gathering is already being done to some extent but on a much smaller scale and with a less centralized base than I am suggesting. The work that has been done has provided important findings of genetic mutations carried down through generations within families afflicted with Parkinson's. The ability to identify specific mutated genes which disrupt the normal functioning and ultimate death of the neurons involved in Parkinson's may lead to the development of drug and/or transplant therapy. On the invironmental/toxin side of the coin, work is being done also. The U.S. Department of Health & Human Services has its "Agency for Toxic Substances and Disease Registry" The Army has a program to research toxins and their effect on military personnel. California has a state-run registry. Do any of these agencies collaborate on their findings? I don't know. Should they? I think so. The University of Illinois has their "National Center for Super Computing Applications" and I believe there are several such centers located throughout the nation. Can they handle and process the data collected? I don't know. Should they try? I think so. I know that there are obstacles: Money, patient privacy, busy physicians reluctant to participate, finding enough interest in this approach to make it work (possibly many universities and research teams would be reluctant to relinquish their own programs to one centralized program), and finally, finding the expertise to put this all together, the knowlege to ask the right questions for input data and the ability to decipher and make the best use of the output data. It is professed that in order to cure a disease, you must know its cause. This surely holds true for Parkinson's as well. Ten million dollars. How would I spend it? If you could prevent/eliminate the cause of Parkinson's you would have eliminated the need for both (1) and ( 2) so I would direct at least 5 million to a data base. For those who need treatment now, I would think that gene and/or stem cell transplantation hold the most promise as treatment for both 1 and 2 so, I suppose I would put four of my remaining 5 million toward that. With the remaining one million I would throw one, big, nation-wide "HAPPY HOUR" to celebrate and recover from the exhaustion of figuring out how to spend the original ten million. Dee ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn "Willy Loman never made a lot of money. His name was never in the paper. He's not the finest character that ever lived. But he's a human being, and a terrible thing is happening to him. So attention must be paid...Attention, attention must finally be paid to such a person." - Arthur Miller - Death of a Salesman ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn