through CureLauncher after she was told by her doctor that there was nothing else that could be done for her.
The service found a study that was
run by the National Cancer Institute in Washington, D.C. They paid for her plane ticket,
picked her up at the airport, and paid for her stay there. Another free website service that
helps patients find clinical trials is called My Clinical Trial Locator (
www.myclinicaltriallocator.com), the brainchild of Bruce Moskowitz, M.D., a primary care physician in West Palm Beach, Fla. “Eighty percent of clinical trials
be a daunting task. And many people are reluctant to even start, deeming studies as too risky, not worth time and effort, or an option that is a last resort for the terminally ill. For years, the major Web portal for
medical trials has been ClinicalTrials. gov, a U.S. National Institute of Health-sponsored site. But it is daunting to navigate. Now, CureLauncher and other
similar services are striving to fill a need by providing less confusing ways to find experimental treatment. CureLauncher provides a
“relationship manager” with people who click on the site. This isn’t just an automated voice — it’s a trained person who works for the company and will sort through all the trials to find the ones most appropriate for each patient. This is important because patients
come to CureLauncher for many diverse reasons and a guide is needed to sort through a patient’s condition to match appropriately with a trial. One woman with late-stage pancreatic cancer sought help
don’t fill up because people can’t find them and that holds up innovation and research,” says Dr. Moskowitz. “We list clinical trials worldwide, not just for cancer but also for everything from Parkinson’s disease to thyroid problems. “Unlike the government site for
clinical trials where you have to go back every 24 hours to see what has been added, My Clinical Trial Locator provides notifications when new trials open,” Dr. Moskowitz says. Mandell became determined to
find clinical trials after he hit a wall in his stroke recovery. “In 2004 I got into a study at the Brain Rehabilitation Center in Gainesville, Fla. “The doctors there are
MOSKOWITZ
constantly doing research and I made some serious progress,” he said. He became involved in other studies after that.
“My ability went up at least 25
percent,” he said. “Research studies are ideal for stroke because, like any exercise program, you have to change things up,” said Mandell. Even today, after his “plasticity”
— a word stroke researchers use to describe the ability to control a limb — has improved dramatically, he’s still looking for new trials to join.
CLINICAL TRIALS:
WHAT YOU NEED TO KNOW GOING IN
S
troke patient Bob Mandell, a veteran of many studies, provides
these tips to those considering trial enrollment:
Fully understand risks and benefits. No treatment is without risk
and it’s important that research participants understand possible downsides. Do as much research as possible about the treatment you’ll be getting. If possible, meet with the lead researcher on the study before enrolling.
Have a strategy. Know what you want to get out
of the study. For instance, if the study will require a significant time investment, choose one that is at least in Phase III (see accompanying article on trial stages). This indicates that there is at least some evidence that the drug or treatment will work. Pharmaceutical companies do a lot of preliminary research that goes nowhere.
Come prepared. For your first meeting with the
trial staff bring three things: your medical records, a list of the drugs you take, and the treatments you’ve previously undergone. Have it all down on paper.
Be patient. You have to understand that
trials take time to start. Also, benefits can be slow to realize. You may be required to keep records and self- monitor your condition during and after treatment.
Go in with a friendly attitude. If you’re friendly, the staff is more
likely to go the extra mile for you. Show that you are invested in the trial, in the outcome, and in helping the researchers.
MARCH 2015 | NEWSMAX MAXLIFE 81
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