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Hi Linda and Marjorie and All, A closer look reveals many registries already in place and many planned. I was also able to locate the report from the Nebraska registry. (below) Conducting Research Under Managed Care Expensive studies of this type are usually funded by the National Institutes of Health (NIH) or the Centers for Disease Control and Prevention (CDC). The NIH funded the vascular disease study, as well as another study on possible links between Parkinson's disease and environmental exposures, including water supplies, occupations, housing, smog and smoking. This study looks at genetic markers to see if a combination of factors leads to Parkinson's. By using the pharmacy database (all prescriptions for levodopa drugs or dopamine agonists), we can identify potential subjects and gain permission for detailed patient interviews and blood tests. The registry for this study is four times larger than any prior study on this topic, and it is still expanding. (and this was 1997) http://www.scma.org/scp/scp970102/bernstein.html NINDS Implementation Plan NINDS - Fiscal Year 2001 Budget Request A new patient registry for Parkinsons disease, to be followed by a larger population-based study, http://www.hhs.gov/asmb/budget/testify/b20000229a.html http://www.hhs.gov/progorg/asmb/budget/testify/b20000229a.html http://www.ninds.nih.gov/about_ninds/fy01_nindshtr.htm Neuroscience at the New Millennium Implementation Update May 2000 Scroll down to... Recent and Ongoing Initiatives Morris K. Udall Parkinson's Disease Research Centers of Excellence Consortium on Deep Brain Stimulation for the Treatment of Parkinson's Disease and other Neurological Disorders Parkinson's Disease Patient Registry etc. http://nindsiis2.ninds.nih.gov/about_ninds/implementation_plan.htm National Institute of Environmental Health Sciences Strategic Plan 2000 - A Five Year Program Americans believe that reducing exposures to adverse environmental agents is the best way to protect their health and the health of their children. This belief is supported by a continually growing base of knowledge suggesting that environmental chemicals may be important triggers of many human medical problems, such as: Parkinson's Disease http://www.niehs.nih.gov/external/plan2000/p-plan.htm Fact Sheet on Xenotransplantation September 20, 1996 4. Public Health Needs A national registry is recommended to provide information to assess long-term safety... http://www.fda.gov/opacom/backgrounders/xeno.html http://xenotransplant.ineu.org/xenotrans/news/19960920.html Xenotransplantation: Clinical, Ethical and Regulatory Issues Should xenotransplantation registries be part of existing solid organ and/or tissue registries? Should they be operated by industry or government? http://www.islet.org/25.htm Halifax Neural Transplantation Patient Registry We have set up a registry of Parkinson's patients..... http://www.medicine.dal.ca/dnts/neurotr.html LB 496, (1996) - Parkinson's Disease Registry Act Parkinson’s Registry is First in Nation... Lincoln -- As the first and only state to create a Parkinson’s Disease Registry, Nebraska issued its first annual report last week to physicians and pharmacists statewide. The new registry is the result of the passage of LB 496 in 1996, according to the Nebraska Department of Health and Human Services Regulation and Licensure. As of December 31, 1999, 4,426 Nebraskans diagnosed with Parkinson’s were reported to the registry. Of this total, 2,234 were male and 2,179 were female (13 were unspecified). Persons diagnosed with Parkinson’s prior to January 1997, may be included on the registry, but not in data used for research. Both physicians and pharmacists are required by law to report newly diagnosed patients or persons taking a select number of drugs to Regulation and Licensure. Individuals may also self-report to the registry. "This report documents the current status of data collection efforts and uses of data maintained in the registry," according to Stephen Frederick, Administrator of the Data Management Section. "The registry database can help identify the incidence and possible risk factors concerning Parkinson's. It will also assist in planning for health care requirements, education of health care providers, and hopefully, finding a cure for the disease." Frederick noted that a major research project with the University of Nebraska Medical Center is already in progress to evaluate how certain agricultural exposures might contribute to Parkinson’s. The Parkinson's Disease Registry Advisory Committee meets every December to review which prescriptions are relevant to the registry. Members of the Advisory Committee represent consumers, researchers, and medical and pharmaceutical professionals. Parkinson’s disease is not a fatal illness in itself, although it forces a person to adapt to a loss of mobility, tremors, general slowness and balance problems. Approximately 1.5 million Americans are affected with Parkinson’s and as many as 50,000 Americans are diagnosed with Parkinson’s each year. Although 15 percent of patients are diagnosed before age 50 and persons in their 20s sometimes get the disease, Parkinson’s is generally associated with senior citizens. One percent of the population over 60 is affected by Parkinson’s disease. Michael J. Fox, Muhammad Ali, Janet Reno, and the late Charles Schultz are several notable people diagnosed with Parkinson’s. For additional information regarding Nebraska’s Parkinson's Disease Registry, contact Stephen Frederick, Administrator, Data Management Section, in Regulation and Licensure (402) 471-0147 or by e-mail at [log in to unmask] http://www.hhs.state.ne.us/new/600nr/parkdis.htm They do have rules... see Chapter 17 at: http://www.hhs.state.ne.us/reg/t174.htm Revised Statutes 81-664: Terms, defined. http://www.nol.org/legislative/statutes/R/81/06/R8106064.html Revised Statutes 81-688: Termination date June 30, 2015. Release of data; other sections applicable. All data and information developed or collected pursuant to the Parkinson's Disease Registry Act and the release of data from the Parkinson's Disease Registry shall be subject to and comply with sections 81-663 to 81-675. For purposes of the Parkinson's Disease Registry, data may be released either as Class I data or Class II data or as Class III data or Class IV data as classified in section 81-667. http://www.nol.org/legislative/statutes/R/81/06/R8106088.html John Goldner, M.D. has served on a subcommittee for the Health Department along with Ally Jorgensen, Pharm.D., in order to select the drugs to be included in the Parkinson's Registry. http://nshp.creighton.edu/BPE1-97M.htm The State of Health Privacy - Nebraska Statutes http://www.healthprivacy.org/resources/statereports/ne.chart.html Department of Veterans Affairs Memorandum Date: JUN 0 1 2000 (Scroll down to 5.0) To give each PADRECC maximum flexibility to pursue its research agenda and capture vital information for VHA to use for ongoing development and resourcing of these centers, a data registry for the treatment of Parkinson's Disease will be created within the Office of Patient Care Services (PCS). Each PADRECC will be expected to provide data on a regular ongoing basis to this data repository. The content and format of the data elements required to maintain this registry will be determined by PCS. http://www.va.gov/resdev/fr/parkinsons_sol.htm Medical & Molecular Genetics At IUSM scroll down to the end... This funding would also allow IUSM to establish a registry for Parkinson disease and to continue its collaborative research to locate the genes that cause it. http://www.medicine.indiana.edu/iu_medicine/97_fall/mmgenetics.htm Beate Ritz, M.D., Ph.D. Department of Epidemiology, School of Public Health Dr. Ritz is interested in studying environmental causes of Parkinson's disease and is actively involved in establishing a PD registry for Los Angeles and Ventura Counties. http://brainmapping.loni.ucla.edu/BMD_HTML/PD/ritz/RitzInterests.html http://brainmapping.loni.ucla.edu/BMD_HTML/PD/dackerma/dackermanInterests.html Development of a Parkinson’s disease registry for Southern California APDA-center grant (PI:Ritz) 3/1/99 - 8/31/99 This pilot project will evaluate several mechanisms to obtain Parkinson’s cases countywide in rural California using information from health care providers, Parkinson’s disease foundations, clinics, and Medicare. http://www.ph.ucla.edu/class/epi/epi260/Ritz_home_page/ritz_research.html http://www.coyotewebart.com/parkinsons_news/currenttop.html#CaReg Chicago - Registry (including Parkinson's) http://www.northwestern.edu/aging/join.htm http://www.northwestern.edu/aging/vol13no4.htm#Aging Research Registry News Boston - Registry (including Parkinson's) http://www.hebrewrehab.org/utilreso.htm Clinical Trials Patient Registry (including Parkinson's) http://www.clinicaltrials.com/trials/registry.asp Agency for Toxic Substances and Disease Registry (ATSDR) http://www.atsdr.cdc.gov/ Pesticides & Environmental Toxins http://www.enviroweb.org/hecweb/archive/pestfile/pesticide2.htm http://www.enviroweb.org/hecweb/archive/pestfile/parkinso.htm http://www.enviroweb.org/hecweb/archive/pestfile/parkinson's.htm http://www.enviroweb.org/hecweb/archive/pestfile/parkinson's2.htm Posted at 07:16 a.m. PST; Wednesday, January 27, 1999 Study links Parkinson's disease to chemicals http://seattletimes.nwsource.com/news/nation-world/html98/park_012799.html "Chemicals Called Main Cause of Parkinson's Disease," which points up the fact that cancer is not the only disease corporate polluters are responsible for. http://nuance.dhs.org/lbo-talk/9901/1527.html Doctor says Parkinson's research at 'crossroads' 06/27/2000 IOWA CITY (AP) - A University of Iowa doctor says he is not surprised by a study that says Iowans and other Midwesterners are twice as likely to have Parkinson's disease as people in other parts of the country. "We think that one of the causes of Parkinson's is environmental factors, and toxins are among those," said Robert Rodnitzky, vice chairman of the Department of Neurology. "One of the toxins that is most considered as a risk factor is pesticides. We know that in a rural state like ours, there's a much greater risk of exposure to pesticides," he said. The National Parkinson's Foundation estimates that about 1.4 million people in the U.S. have the neurological disease, or one of every 250 people. In Iowa, North Dakota, South Dakota, Nebraska and Minnesota, the foundation estimates that one in every 125 people have the disease. The foundation suggests several reasons why the Midwest rate is higher, including higher than normal use of fertilizers, fungicides, insecticides and pesticides. Genetics also could play a role. The five Midwestern states have a high population of natives of Northern Europe, which has a higher than normal prevalence of the disease, the foundation said. The foundation supports the formation of a national Parkinson's registry, which would improve funding for Parkinson's research as well as finding participants for Parkinson's studies. Rodnitzky said Parkinson's research is "at a crossroads." "It's pretty clear that Parkinson's gets less than its fair share of federal research funding," he said. "If we get an accurate sense of how big an impact the illness has on society, it would help foster (and) support Parkinson's disease research." University Hospitals is participating in a National Institutes of Health study of siblings with the disease. Researchers will look for common genetic traits that might make people more susceptible to the disease. http://www.thonline.com/News/06272000/Iowa/213477.htm See also: Providing better treatment for patients with Parkinson's disease: The creation of a Parkinson's Disease Register http://www.parkinsonsdisease.com/lwp/LWP13.HTM The Mulligan Foundation, a non-profit organization, founded in 1993 "to provide medical research and quality of life information on Parkinson's disease to individuals affected by the disease, their families, friends, and caregivers." Includes on-line survey, Parkinson's Registry (private database), and support groups. http://www2.parkinsons.org The Mulligan Foundation - Enter your information in the Parkinson's Registry http://www2.parkinsons.org/mulligan/registry/ cheers .......... murray [log in to unmask]