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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:

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.
  • Find out about current PD clinical trials.
  • Access information describing the clinical trials process
 
  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.
  • Identify references in scientific and academic journals relating to PD research and clinical trials.
  • Find out about Parkinson’s Study Group clinical trials that are in progress.
 
  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.)
  • Access data on 30+ new PD treatments that are in the “development pipeline”.
 
  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.
  • Review an extensive list of approved clinical trials being conducted internationally.
  • Subscribe to a free e-mail service which notifies you about new Parkinson’s clinical trials in your state.
 
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
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.
  • Find information on political actions, news articles and editorials, sample letters and advice on easy ways for individuals to contact representatives in Congress.
 
  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.
  • Read reports on the website, or subscribe to receive daily e-mail reports.
 
  The Parkinson Action Network (PAN)
www.parkinsonaction.org
Tel: (800) 850-4726
PAN is the unified information and advocacy voice of the PD community.
  • Access the grass-roots advocacy network including PAN’s state coordinators, members of Congress and local media by zip code.
  • Find out what’s happening in Congress and executive branch on research findings.
 
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.
  • Access the latest neuroscience news and review recent releases.
  • Review or print NINDS publications, including the Parkinson’s Disease Research Agenda and patient-level fact-sheets and brochures.
  • Access ‘PubMed’, to review abstracts and references from more than 11 million articles, published in more than 4,000 biomedical journals since 1966.
 
  WE MOVE
www.wemove.org
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.
  • Review information for patients, professionals and the public about the latest clinical advances, management and treatment options for neurologic movement disorders.
  • Join the e-bulletin service to receive research news updates.
 
  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.
  • Search the archives for “Parkinson’s” to review breaking and recent science news from around the world.
  • Review a list of other science-related sites aimed at helping web surfers in their online explorations.
 
  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.
  • View the latest science news or access the archive for easily retrievable releases from around the world.
 
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
 
Happy Surfing!