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Parkinson's Disease: How to Keep Up With the Latest Research

By , Senior contributing editor
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Quick summary

Keeping up with the latest research on Parkinson's disease helps you make sure the person you're caring for is getting the best drugs and care available. Here's how to stay on top of the news.

Surf smart

"If you go to Google and type in a disease, you're going to get two-and-a-half-million pages. And it's very hard to filter out what's good and what's not good," says Naomi Miller, manager of consumer health information at the National Library of Medicine (NLM). "It's better to start with a site that you trust and then branch out from there."

MedlinePlus.gov , the NLM's consumer-friendly health website, is one such starting point that can guide you to other carefully vetted sites. Most .gov and .edu sites are trustworthy. Websites of major medical centers or professional societies, such as the American Academy of Neurology, can also be good sources. So can volunteer health organizations -- but, Miller cautions, "you have to look at what they are and what their purpose is -- do they just want to get your money?"

To judge a website's credibility, it's worth viewing the NLM's online tutorial, Evaluating Internet Health Information .

Tap into Parkinson's patient advocacy groups

The following reputable nonprofit Parkinson's disease organizations post news about the latest studies on the illness, as well as information on scientific projects that they're funding.

Their research updates vary in format from quarterly print magazines to monthly e-mails. Depending on the organization, you can subscribe to these publications for free and have them delivered by snail mail or e-mail, or read them or download PDF versions online.

For example, the National Parkinson Foundation features its Research Reports section in its quarterly Parkinson Report magazine. It also monitors promising experimental therapies in a document called "What's Hot in Parkinson Disease?" updated monthly; look for it on the foundation's home page.

The Michael J. Fox Foundation's Parkinson's in the News posts news articles relating to Parkinson's disease from mainstream media outlets and press release services. And under its MJFF Viewpoints , you'll find occasional News in Context interviews with leading scientists who comment on Parkinson's disease-related studies.

More ways to keep up with Parkinson's research

Other ways to search for Parkinson's research news

Try experimenting with RSS feeds, searches of online news services, and alert services.

  • RSS (Really Simple Syndication) feeds deliver the freshest content from your favorite websites to one window on your computer. For instance, news sources such as the New York Times and CNN let you sign up for free RSS news feeds on topic areas such as health news or science; each feed is like a constantly updated table of contents listing the most recent story headlines and Web links to the full-text articles.
  • Topix.com , a community news website, maintains a Parkinson's disease news site with continually updated postings and a forum for commenting on articles. You can use Topix's advanced search to customize your own queries of news and blog sources and restrict results to your favorite newspaper or your zip c ode.
  • Google News and Yahoo! News also allow tailored searches. For example, go to the Yahoo! advanced news search and enter Parkinson's neuroprotection in the search dialog box for results showing "all of these words." The engine will return only stories about potential neuroprotective drugs for Parkinson's disease. You can also limit results to stories from a selected news source. Another option: Set up Google Alerts or Yahoo! Alerts to receive Parkinson's news e-mails.

More ways to keep up with Parkinson's research

Get up to speed on clinical trials and the government's research plan

Clinical trails

If a patient is considering enrolling in a clinical study of a new Parkinson's drug or intervention, the following websites can help you identify ongoing clinical trials in a particular geographic area and learn more about the risks and benefits of participating.

  • The National Institutes of Health's ClinicalTrials.gov . Searching for Parkinson's disease online turns up more than 450 trials, about half of which are still recruiting volunteers. Each listing briefly explains the study's purpose, where it's being conducted, and who's eligible to participate. At the bottom of the results page, you can click on a link to subscribe to an RSS feed that will notify you of new trials as they are posted.
  • PDtrials.org . This site's database lists many of the same studies as in the NIH's ClinicalTrials.gov, plus additional trials, but it's more user-friendly, with study details explained in simple language. You can sign up for a regular e-mail update, called the "PDtrials E-mail Bulletin", to learn about newly opened clinical studies as well as research news.
  • Parkinson Pipeline Project . Created by a volunteer group of Parkinson's patients, this website features a database that makes it easy to see which therapies and diagnostic tools are in the research development pipeline and how far along they are.

The government's research plan

You'll get an overview of federal research goals for Parkinson's disease from the National Institute of Neurological Disorders and Stroke's (NINDS's) 2010 Parkinson's Disease Research Plan . The Parkinson's Disease Foundation provides a handy summary, "Citing Progress and Charting Prospects: The New NIH Parkinson's Research Plan" .

The NINDS is currently testing whether the dietary supplement creatine can delay the progression of Parkinson's disease. For details, visit NIH Exploratory Trials in Parkinson's Disease (NET-PD) .

More ways to keep up with Parkinson's research

If you wish to dig deeper

If you're science savvy or willing to dive in and educate yourself, a number of websites let you follow research at the cutting edge.

  • MEDLINE/PubMed is the NLM's database of summaries of biomedical research journal articles. A tutorial gets newcomers started in learning how to browse the database using key word searches. (If you're having trouble understanding medical and scientific jargon, MedlinePlus provides an online medical dictionary and encyclopedia.)
  • Cochrane Reviews lets you search for free, plain-language summaries of scientific reviews that rigorously assess evidence for and against different Parkinson's disease therapies.
  • WE MOVE , Worldwide Education and Awareness for Movement Disorders, is a nonprofit organization that has a research news service called E-MOVE, which summarizes fresh findings and news. You can sign up for e-mails about Parkinson's news.
  • The Michael J. Fox Foundation provides much detail about the different investigations it's funding, with a searchable online database of research projects. Visit the website's MJFF Funding Portfolio section .

As promising as research results may seem, it's best to ask a neurologist or another medical expert for a realistic perspective on them. It's unlikely that you'll find a magic bullet to cure your loved onet by scouring the Web, but studies may reveal new insights into how to best manage the illness through available drugs, exercise, diet, or other interventions.

More ways to keep up with Parkinson's research

Learn from others through Web support groups or blogs

Online chat or discussion boards enable you to ask questions and share concerns and information with others going through similar experiences or with health professionals. Look for support groups that have a moderator, says the NLM's Miller, because the presence of a referee can temper the tendency for strangers to anonymously write things they'd never say face-to-face. Also be sure to read the fine print on the privacy policy of any support group website before joining.

Here are a few virtual communities and blogs you might check out: