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I have heard from four folks this evening who have not seen my two postings of Friday, and have received other info from the listserv. Sorry to double load those of you who did receive first posting. Rita More from the vocal Nebraskan - Rita Weeks I am not casting a vote for or against the registry since I live in a state that already has the legislation. But let me provide a little more background as to reasoning behind PD registry in Nebraska............then continue your discussion. Hypothesis: It is possible that there is an environmental link to the development of Parkinsonism in the human population. Question: How do you do an epidemiological study to determine environmental link if you do not have information as to where persons with Parkinson's live? Have lived? PD researchers tried to establish registry/legislation a few years ago and did not succeed. Note of explanation: In order for such records to be maintained by the state department of health.....legislation must be enacted to establish/maintain database. Unless it is mandatory, reporting will not be made.......thus information is not valid or useful because of small representation. Drug sales are not sufficient to report use of PD drugs......large rural area (farming: pesticide, herbicide, natural occuring contaminent in the environment). Many drugs are purchased far from the location of the patient in this state. Reason for concern? Preliminary studies, based on use of drug sales indicate that we may have a significant discrepancy in PD distribution rural vs. urban. (Colon cancer is known to occur at a rate many times above the norm along the Platte River in Nebraska (info gleened from tumor registry. Significant findings re: genetics/environment resulted from this information with re: to colon cancer.)..........is this also true of PD? Can we zero inn on specific area? Can we then zero in on an environmental factor?) Self-reporting factor is included in legislation to permit those persons who seek medical assistance out of state as well as buy drugs out of state to thereby be counted in number of Parkinson's cases in Nebraska. (We have many individuals who go to Kansas City; Colorado; Minnesota or Tennessee for Parkinson's treatment. Soc. Sec #; name; etc is needed to make sure that people are not being counted twice in the database. How many of your states currently have a tumor registry? Do you know if every diagnosis of a tumor, benign or malignant is counted in epidemiologic studies for cancer in your state? The tumor registry in Nebraska has been in place for at least 10 years...possibly longer. PD patient involvemnt: This legislation was introduced by Parkinson's patients. The first legislative hearing found both the physicians and the pharmacists lobbyists opposing the registry (too much paperwork...........one postcard per patient). The registry was deemed to be one of the few things Parkinson's patients could do to help with research after the University of Nebraska Medical Center found it advantageous to their economic structure to drop the Parkinson's Clinic and Information and REferral Center leaving more than 500 patients at the PD Clinic with no Parkinson's specialist in the state of Nebraska. Yes, we have other neurologists. . .I need not elaborate further on that issue. These patients know what can happen when funding is not forthcoming for PD care. What would you do if the Parkinson's unit at your local medical center was yanked in order to expand the resources available for a transplant unit that produced more $$ from patient care for the Medical Center.? I was involved in the fight to maintain the PD clinic/ specialist. I dropped away from the group as the legislative battle persisted because of my own battle with my PD symptoms.........complicated by lack of knowledgeable neuro's near by. (I now travel to Tennessee for neuro visits.....for those of you who are not good with visualizing the mid-continent............that is a drive of about 14 hours from Lincoln, Nebraska. I have tried other neuro's closer....I now am re-established with R. Pfeiffer(formerly at UNMC)....who is worth the drive because he listens to his patients.) Now. Continue with your discussion as to pros and cons of registry. What would you do? --------copy of posting #2 begins here Hi from Rita once again: 1. Registration is mandatory because: In order for epidemiological studies to be worthwhile it is necessary to have as close to an accurate number as possible. We will never have every person with PD on the list..that would be impossible to achieve.........undoubtedly we will miss some. But few would bother to report if it were not mandatory and then the information contained in the database is no longer valid. 2. Why is name, SS#, address necessary if it is not available to researcher. Name and SS# will be used to crosscheck entries. SS# could always be the same...........name could vary..............Are you Mary Alice Jones on your birth certificate and known to your MD as Alice Jones? What if the pharmacy then reports you as Mary A. Jones??? do we count you three times? No, the SS# provides the bounce out of the system. What if a study by a qualified researcher leads to information that might be helpful in finding the cause, but more detailed information is needed to confirm this finding (bloodwork perhaps???; someday in the future DNA studies??....this is hypothetical.......) the State Health Dept might then contact all PD patients who have ever lived in the 6580? zip code area and offer them the opportunity to particpate in a future study if they were interested. 3. "ANY OTHER PERTINENT INFORMATION?" No, this is not religious preference, employments status etc. If we are currently considering in research projects that well water vs. water treatment source for home usage.........that is a valid question..............What was water source when you lived in zip code 6851?. Next year, we may drop water as a possible environmental link and a new pesticide is a suspected culprit..........So add the question did you ever have contact with crabgrass killer? It is necessary to provide for the possible addition/deletion of information on forms requested from a state agency. Allowing for answers to be gained and new questions to be asked ....in other words "PROGRESS". 4. Funding this registry rather than PD research. This is Parkinson's research folks. This is an opportunity for researchers to gather information about our environment and PD. Scientists and neurologists from the medical schools in our state are compiling the questions. Parkinson's patients, families and researchers worked very hard to pass this legislation.