Clinical Trials Want You Plenty of Researchers Need Volunteers, but You Have to Know How to Find Them - and What to Look for Once You Do
Rackl, Lorilyn, Daily Herald (Arlington Heights, IL)
Byline: Lorilyn Rackl Daily Herald Health Writer
Dr. Joel Charrow of Children's Memorial Hospital in Chicago didn't expect to get a long list of patients clamoring to enroll in his clinical trial of a promising new treatment for Fabry disease.
After all, the genetic disorder, which often kills people by age 40, is rare. And simply having the disease isn't enough to qualify for the study. To join, patients must have mild to moderate kidney problems, a common side effect of the illness.
Still, Charrow figured he could get at least five patients signed up. Several months later, he's far from that goal.
"So far, we have one," said Charrow, head of genetics at the Chicago hospital.
Whether you have a rare disorder like Fabry or something far more common such as cancer, diabetes, lower back pain or acne, chances are there is a clinical trial somewhere looking for people like you.
The problem is they often can't find you.
There are currently about 6,000 new drugs, procedures and treatments being tested in 80,000 different locations around the country. But according to a new report from the Association of Clinical Research Professionals, more than 80 percent of clinical research trials are being delayed because there aren't enough volunteers.
This can cause major setbacks for scientists - and patients.
"The development of new therapies is dependent entirely on having people who are willing to try them," Charrow said.
Even when patients are willing and able, locating the right clinical trial can be a challenge. The Internet, however, is making that information easier to find.
With the click of a mouse, patients can locate clinical trials that their own doctors might not even know about. Some services let people sign up for regular e-mails alerting them to the latest studies.
While it still might take some hunting and homework, patients say it can be well worth it - especially when you've run out of options.
That was the case for Ray Dittmann.
Doctors diagnosed the Schaumburg man's pancreatic cancer in January 2000.
Surgeons at Alexian Brothers Medical Center in Elk Grove Village removed the tumor, but Dittmann still faced grim odds. His chance of being alive two years later: between 20 percent and 40 percent.
Dittmann's oldest daughter did some searching on the Internet, made a few phone calls and found a study testing the drug gemcitabine in patients like her father.
For would-be participants like Dittmann, assessing the risks of a clinical trial is just as important as finding the study. Dittmann decided to take the chance.
"I knew it was serious and I had to do something," the 65-year- old man said. "I'm glad I did. As of right now, everything is fine. I'm thankful every day I get up and see the sunshine, or clouds or whatever."
Surfing for studies
The Internet has evolved into an invaluable tool when it comes to linking patients with researchers.
Some comprehensive sites canvass the medical world for trials. CenterWatch, at www.centerwatch.com, lists studies sponsored by both government and industry. It also links to a clinical trials matching service, but the site warns that such services might have an incentive to match patients with a trial that isn't as good an option as others outside their listings. The services typically work on the "bounty" model, getting anywhere from $300 to more than $1,000 for every patient they deliver to trials.
Though CenterWatch gets a fee from industry trials it lists, it doesn't recruit patients or sell patient information. It lets consumers sign up for a free, confidential e-mail message whenever a clinical trial for a particular condition is listed on the site. It also offers to notify users about newly approved drugs for specific medical conditions. …