A local nonprofit dedicated to informing the public about clinical trials has seen a spike in Web site traffic since U.S. Sen. Ted Kennedy was diagnosed with brain cancer last month.
Ken Getz, founder of the Center for Information and Study on Clinical Research, said the senator's surgery on what doctors initially said was an inoperable tumor, has drawn attention to experimental drugs and procedures.
After being diagnosed with a malignant glioma, a lethal type of brain tumor, Kennedy flew to Duke University Medical Center to undergo a risky procedure Monday by expert neurosurgeon Dr. Allan Friedman.
Friedman said the operation was successful, although doctors have not disclosed how much of the tumor was removed, according to the Associated Press.
Kennedy will return to Massachusetts for radiation and chemotherapy next week, and may be treated with such experimental drugs as Avastin, which is designed to cut blood flow to the tumor, according to the AP.
"What we see is that Sen. Kennedy and his family have done the right things," he said. "They've surrounded themselves by family and friends who assisted them in doing their homework ... They're really doing what we advocate for every person - do your homework. We call it education before participation."
Getz, who researches clinical trial participation at Tufts University, wants people to know that although they may not have access to the team of medical experts that Kennedy has assembled, there are plenty of places where they can turn for information.
The center's Web site, ciscrp.org, received 36,299 visitors in May, up 21 percent from the 30,010 users who visited the site in April.
The organization makes medical experts, health screenings and educational resources available for free to the public at Aware for All events across the country. The next event will be at Simmons College in Boston on June 28.
Getz also recommends patient advocacy groups, the National Institute of Health's clinicaltrials.gov, and search engines such as his organization's nationwide database searchclinicaltrials.org.
Over the past year, the number of visitors to searchclinicaltrials.org has jumped from a few thousand to more than 20,000 each month, Getz said.
"If there's one thing you can say about the public and the clinical research community, when they do decide to look into something, they really go crazy finding information," said Getz, who believes people are relying more on online research than referrals from physicians.
"In those instances when a clinical trial might be appropriate (when doctors aren't referring patients)," he said. "In part because they also don't have enough information or confidence in where to find that information."
There are approximately 50,000 clinical trials taking place in the United States, 80 percent are delayed at least one month because of unfulfilled enrollment, according to the center's Web site.
Asked if Kennedy's experience may give terminally ill patients false hope of recovery, Getz said the center makes sure to inform people of the risks associated with clinical trials and experimental treatments.
Only one in five drugs that enter clinical trials are safe and effective enough to win FDA approval, and some of those drugs end up being most effective for different diseases than those for which they were originally intended, according to Getz's book "Informed Consent".
"There's always the risk of raising hope to unrealistic levels, but the issue really comes down to is the glass half full or half empty?," he said. "Do you not mention anything so that no hope is offered, or do you offer some hope and encourage people to become as informed as possible so their expectations are realistic? We've always preferred the latter."
Getz started the organization in 2003 after patients he encountered through Tufts continually asked him for advice about clinical trials.
"I wish we were bigger, but when I step back and look at how far we've come in a relatively short amount of time I'm really proud," he said.
Lindsey Parietti can be reached at lindsey.parietti@cnc.com.
