September 19, 2018

Finding clinical trials

By Jim Miller

Dear Savvy Senior,

What can you tell me about clinical trials and how to go about finding one?

Old and Ill

Dear Old,

Each year, hundreds of thousands of Americans participate in clinical trials in hopes of gaining access to the latest, and possibly greatest, but not yet on the market treatments for all types of illnesses. But, you need to be aware that clinical trials can vary greatly in what they’re designed to do, so be careful to choose one that can actually benefits you. Here’s what you should know along with some tips for locating one.

Clinical Trials

A clinical trial is the scientific term for a test or research study of a drug, device or medical procedure using people. These trials – sponsored by drug companies, doctors, hospitals and the federal government – are conducted to learn whether a new treatment is safe and if it works. But, keep in mind that these new treatments are also unproven, so there may be risks, too.

Also be aware that all clinical trials have certain eligibility criteria (age, gender, health status, etc.) that you must meet in order to be accepted. And before taking part in a trial, you’ll be asked to sign an informed consent agreement. You can also leave a study at any time.

Find a Trial

Every year, there are more than 100,000 clinical trials conducted in the U.S. You can find them by asking your doctor, who may be monitoring trials in his or her specialty. Or, you can look for them on your own at ClinicalTrials.gov. This website, sponsored by the National Institutes of Heath, contains a comprehensive database of federally and privately supported clinical studies in the U.S. and abroad on a wide range of diseases and conditions, including information about each trial’s purpose, who may participate, locations and phone numbers for more details.

If you want some help finding the right trial, try ResearchMatch.org, a web-based resource created by Vanderbilt University that connects willing patients with researchers of clinical trial. Or, use the Center for Information and Study on Clinical Research Participation at CISCRP.org. This is a nonprofit organization that will take your information online or over the phone and do a thorough clinical trials search for you, and mail or email you the results within a week or two. Call 877-633-4376 for assistance.

Those with dementia and their caregivers can also locate clinical trials at the Alzheimer’s Association TrialMatch at TrialMatch.alz.org.

Things to Know

Before deciding to participate in a trial, you need to first discuss it with your doctor to make sure it is appropriate for you. Then, schedule an appointment with the study’s medical team and ask lots of questions, such as:

What’s the purpose of the study and can it improve my condition?

What are the risks?

What kinds of tests and treatments does the study involve, and how often and where they are performed?

Is the experimental treatment in the study being compared with a standard treatment or a placebo?

Who’s paying for the study? Will I have any costs, and if so, will my insurance plan or Medicare cover the rest?

What if something goes wrong during or after the trial and I need extra medical care? Who pays?

For more information on clinical trials for older adults, visit the National Institute on Aging (nia.nih.gov/health/clinical-trials), which has many informative articles including one on “questions to ask before participating in a clinical trial.”

Jim Miller is a contributor to the NBC Today show and author of “The Savvy Senior” book.

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