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8 Ways to Access Cutting-edge Care: Clinical trials, patient organizations, and your own physician can help you access state-of-the-art treatments.

Kritz, Fran

doi: 10.1097/01.NNN.0000513023.23526.6a
Departments: The Waiting Room

Quick Tips: Getting access to state-of-the art treatment is easier than you might think.

ISTOCK: FATCAMERA; ILLUSTRATIONS BY KENEDA

ISTOCK: FATCAMERA; ILLUSTRATIONS BY KENEDA

The day-to-day care for many neurologic conditions is all-consuming, which doesn't leave much time for finding cutting-edge treatments or experimental therapies, or even keeping up with the latest research. Or does it? With these strategies, it may not be as hard as you think.

1. INVEST IN RESEARCH. Ask your doctor how to find the latest research and who the experts are for your condition. Follow those experts' published studies and sign up for alerts with keywords such as “epilepsy” or “migraine.” Check the website http://EurekAlert.com for press releases about dozens of new studies every day, and use the search function to refine your search.

2. SIGN UP FOR CLINICAL TRIALS. A website maintained by the National Institutes of Health, http://ClinicalTrials.gov lists information for just about all privately and government-funded clinical trials.

3. WEIGH YOUR OPTIONS. Always review potential trials with your physician. If a trial is “blinded,” you won't know if you're getting the drug or a placebo, which may not work if you need to be on medication to relieve symptoms or slow progression, says Richard A. Bernstein, MD, PhD, professor of neurology at the Northwestern Feinberg School of Medicine in Chicago. On the other hand, enrolling in a blinded trial may be the only way you can access a new treatment to find out if it really works. Ask your doctor to look at available evidence to know whether a trial is good for you.

Not all clinical trials involve extra time or effort. Some may address symptoms or well-being rather than treating a specific condition. Recently, for example, the National Multiple Sclerosis Society listed a trial aimed at teaching exercise strategies to decrease fatigue, which was conducted through a regular teleconference.

4. JOIN A SUPPORT GROUP. Hospital-based support groups often include a research update by staff physicians, and participants may share what they've heard from their doctors or in articles they've read. But don't try anything new without first speaking to your doctor, cautions David N. Alexander, MD, director of the Neurological Rehabilitation and Research Unit at the Ronald Reagan UCLA Medical Center in Los Angeles. “I like it when patients bring articles or news from a support group or that they've found on their own, so I can evaluate the information and we can discuss it together,” he says.

To find a support group, ask your doctor's office for information, call the social work office at nearby hospitals, or call the national office of patient organizations.

5. CONSIDER A SECOND OPINION. Getting a second opinion doesn't mean you don't have confidence in your doctor. It can simply be a chance for someone with fresh eyes to examine you and review your records, says Dr. Alexander. That's especially true for patients who also see a specialist, says Michael S. Okun, MD, FAAN, chairman of the department of neurology at the University of Florida and the national medical director of the Parkinson's Disease Foundation. But let your primary doctor know first. He or she may be able to help you find that doctor and then be ready to consider that doctor's opinions after the review.

6. ENGAGE WITH PATIENT ORGANIZATIONS. Become a member of your local and national patient organization. Many offer email alerts and post research and medical news on their websites. The Epilepsy Foundation, for example, has a weekly podcast that features news about the condition. Most of the organizations also have Facebook pages where people with similar conditions can comment on posts or share information about new treatments and trials. Copy, paste, and print posts and comments to share with your doctor at your next visit to see if they are reasonable options to consider.

7. ENLIST FAMILY AND FRIENDS. If your condition limits the amount of energy you can devote to attending support groups or doing online research, ask friends and families to help or give them specific tasks that might yield new information. For example, a friend could set up a system that allows you to monitor or evaluate email alerts, potential clinical trials, and so forth.

But don't get overwhelmed by an avalanche of data, especially if you have a large support team, says John Andrejack, EdD, a research advocate for the Parkinson's Disease Foundation, who has Parkinson's disease. Scan the research or tune in to webinars on different topics.

8. MANAGE EXPECTATIONS. If you're satisfied with your treatment, that's okay too, says Dr. Alexander. “A miracle isn't necessarily out there if only someone would tell you.” Keep sleuthing in perspective. It's important to know what's coming down the pike, but it's equally important to maintain regular checkups and take medication as prescribed. “Aspirin to prevent a subsequent stroke may not seem sexy,” says Dr. Alexander, “but for a long time now it has been shown to be effective.”

© 2017 American Academy of Neurology