SIDEBAR Read Up Before Signing Up If you are interested in participating in a clinical trial, what should you know before signing up? Here are some recommendations from journalist Alex O’Meara and leading medical organizations: - While you will likely receive excellent care — in fact, another 2008 Archives of Internal Medicine study reported that hospitals participating in clinical trials provided better care than those that didn’t — the clinical trial is not about “curing” you. You may not get a better treatment at all. The trial is about testing treatments and gathering data. - Take someone with you when you meet the trial’s sponsor. You’ll be barraged with information and they can keep track of the questions you want to ask and write down answers. - Insist on informed consent. Take your time to read the forms they give you, and if anything confuses you, ask questions. - Take your participation seriously. Do what the trial asks, whether it’s taking medication at a certain time, keeping a symptom diary, or taking certain tests. If you can’t do this, don’t fudge your participation. It’s better to drop out than give the study bad data. - Ask for complete information on known side effects of the treatments involved in the study, but also understand that experimental treatments may have side effects that are as yet unknown. That’s part of the reason they’re experimental! The American Cancer Society also suggests that you ask yourself and your doctor these questions before signing up to participate in a trial (the questions are good for anyone with any condition, not just cancer patients): - Why do I want to take part in a clinical trial? - What are my goals and expectations if I decide to take part? How realistic are these? - How sure are my doctors about what my future holds if I decide to participate? If I decide not to? - Have I considered the chance of a benefit to me versus the risk of the trial? The time, money and other factors involved? - What are my other possible options? If you’re looking for a clinical trial to participate in, there are several excellent online databases: - Clinicaltrials.gov, run by the National Institutes of Health, is a registry of federally and privately supported trials in the United States and overseas. - Centerwatch.com has a clinical trials listing service and also provides news and other resources for patients as well as professionals involved in clinical trials. It can give you an overview of the process and send you e-mails when certain types of clinical trials are launched. If you have cancer, Cancertrialshelp.org, run by the Coalition of Cancer Cooperative Groups, has the most up-to-date information on cancer clinical trials in its TrialCheck database. You can also read about other patients’ experiences with clinical trials on the site. — Gina Shaw

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