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Web Resources for People with Parkinson's - Part Two
In PDF News & Review Spring 2003 issue, we provided readers with information on available web resources for the PD community within a spectrum of categories that included; Advocacy Groups; Caregivers; Listserv’s; Medical Information Sites and resources on the web for Younger Audiences. In this edition, we conclude our two-part series with several additional categories of successful cyberspace explorations in the Parkinson’s field.
If you are seeking information about Parkinson’s clinical trials, background on pharmaceutical companies…or if you are seeking to update yourself on the latest scientific news or discover the latest directions of political advocacy groups… look no further! Here we go:
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| Clinical Trials | ||
| Clinical Trials | ||
| www.clinicaltrials.gov | ||
A resource site developed by the National Institutes of Health to provide patients, family members and members of the public with current information about clinical research studies.
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| Parkinson Study Group | ||
| www.parkinson-study-group.org | ||
A nonprofit, cooperative group of Parkinson’s disease experts from medical centers in the U.S. and Canada dedicated to improving PD treatments through clinical trials.
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| PD Pipeline | ||
| www.pdpipeline.org | ||
Provides complete information on new Parkinson therapies currently in clinical trials. (This website depends on the work of volunteers; contact the webmaster if you would like to help.)
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| Centerwatch | ||
| www.centerwatch.com | ||
An information service for patients, pharmaceutical, biotechnology companies and research centers that are involved in clinical trial research. Centerwatch publishes a wide range of newsletters, books and directories.
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| Medications | ||
| RXList | ||
| www.rxlist.com | ||
| Useful index of FDA-approved drugs that enables users to look up drug interactions and side effects. | ||
| Pharmaceutical and Biotech Research | ||
| Biospace | ||
| www.biospace.com | ||
| Reports on biotech and pharmaceutical companies. Can be searched by company and disease indication. | ||
| Pharmaceutical and Biotech Research | ||
| Pharmaceutical companies that manufacture and/or distribute Parkinson’s drugs have their own websites which contain a wealth of information on Parkinson’s disease that is freely available for web-browsers. Listed here are the pharmaceutical companies that are involved with the largest selling Parkinson’s drugs. In most cases, using the search feature and ‘Parkinson’s disease’ directs viewers to the appropriate sections, news releases and articles. | ||
| Pfizer (recently merged with Pharmacia Upjohn, manufacturers of Mirapex) | ||
| www.pfizer.com | ||
| View downloadable publications such as “Talking to Kids about Brain-Related Conditions” and obtain prescribing information for the Pfizer drug, Mirapex® | ||
| Glaxo SmithKline | ||
| www.gsk.com | ||
| This site contains a total of 50 items on Parkinson’s disease. The GSK Parkinson’s drug, Requip®, has a dedicated site www.requip.com, where you can find information and background on the drug. | ||
| Medtronic | ||
| www.medtronic.com | ||
| Medtronic developed ‘Activa® Therapy’, for the surgical technique, known as deep brain stimulation (DBS). The FDA approved DBS in 2002 for application in the area of the brain known as the subthalamic nucleus where it has been found to be especially effective for the treatment of Parkinson’s. On this site, view extensive product and patient information about this treatment including a feature that allows you to find physicians who are able to undertake this surgery. A new Medtronic website www.newhopeforparkinsons.com provides more specific information about DBS and encourages viewers to sign-up for a monthly newsletter. | ||
| Bristol Myers Squibb | ||
| www.bristolmyerssquibb.com | ||
| View full prescribing information for Parkinson’s medications, Sinemet® and Sinemet® CR or go to www.sinemetcr.com to access a patient diary and other product information. | ||
| Novartis | ||
| www.novartis.com | ||
| A section called ‘Senior Health’ links viewers to information about Parkinson’s and to www.comtan.com, where detailed information can be obtained on the new Novartis combination drug, Stalevo. | ||
| Political Advocacy | ||
| Coalition for the Advancement of Medical Research (CAMR) | ||
| www.camradvocacy.org | ||
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Ph: (202) 833-0355 An umbrella organization for academic, research, disease and patient organizations that support investigative freedom in such areas as stem cell research and somatic nuclear cell transfer.
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| Grass Roots Connection | ||
| www.grassrootsconnection.com | ||
| Provides information and tools to assist the advocacy efforts of individuals to influence lawmakers to pass legislation and budget funds for PD treatments and research. | ||
| Kaiser Network Daily Health Policy Reports | ||
| www.kaisernetwork.org/daily_reports/rep_hpolicy.cfm | ||
News and analysis of national and state-level health care policy.
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| The Parkinson Action Network (PAN) | ||
| www.parkinsonaction.org | ||
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Tel: (800) 850-4726 PAN is the unified information and advocacy voice of the PD community.
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| Science News | ||
| National Institute of Neurological Disorders and Stroke | ||
| www.ninds.nih.gov/index.htm | ||
NINDS aims to lead the neuroscience community in shaping the future of research and its relationship to brain diseases. NINDS promotes collaboration throughout the scientific community and provides authoritative neuroscience research information for the general public.
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| WE MOVE | ||
| www.wemove.org | ||
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Ph: (212) 875-8312 WE MOVE is a nonprofit organization providing a comprehensive resource for movement disorder information and education – primarily for professionals but increasingly for patients and families.
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| Science Daily | ||
| www.sciencedaily.com | ||
Described as one of the internet’s leading online magazines and web portals devoted to science, technology and medicine. This free (it is supported through advertising) service brings you breaking news about the latest discoveries and hottest research projects in everything from astrophysics to zoology. Science Daily is unique in that the magazine articles are selected from news releases submitted by leading universities and other research organizations around the world.
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| Eurek-Alert! | ||
| www.eurekalert.org | ||
This online press service created by the American Association for the Advancement of Sciences (AAAS) provides a forum for research institutions, universities, government agencies, and corporations to distribute science-related news.
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| Web Directories | ||
| www.pdindex.org | ||
| www.geocities.com/murraycharters | ||
| These two websites are gateways to information about Parkinson’s disease on the Internet. Both are comprehensive and well organized, listing broad subject headings by theme, then allowing browsers to drill down into specific topics. The sites also provide links to articles, organizations, news stories and much more across the web. | ||
| Quick Reference | ||
| Where do I find: | ||
| Information on current PD clinical trials? | ||
| www.clinicaltrials.gov | ||
| www.pdpipeline.org | ||
| Information on the advocacy effort? | ||
| www.parkinsonaction.org | ||
| Updates on the latest news in science? | ||
| www.ninds.nih.gov/index.htm | ||
| www.sciencedaily.com | ||
