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 …