In Orlando, more than 550 clinical trials are looking for participants to help find better treatments and cures for such chronic diseases as cancer, AIDS and diabetes. Across Florida, nearly 2,500 studies are looking for subjects.
“We have a lot of clinical trials going on here, and they are a struggle to fill,” said Dr. Jason Lang, a pediatric pulmonologist at Nemours Children’s Hospital in Lake Nona who is leading a clinical trial for hard-to-control asthma.
So far, his team has spent two years enrolling 40 patients in the study. He’d like to have 100 by next year.
“We’re spending a lot of resources trying to find eligible participants,” Lang said. “A service that brings patients to my door would be fantastic.”
Last month, two Michigan entrepreneurs launched a matchmaking service that does just that.
CureLauncher connects patients who cannot find a cure for what ails them — or in some cases what is killing them — with clinical trials offering cutting-edge treatments.
“Clinical trials offer drugs and treatments that can still be years away from market, but some patients can’t wait,” said David Fuehrer, president and co-founder of the new company.
“Many miss out on potentially beneficial treatments because they don’t know how to connect,” he said.
Only 4 percent of Americans know how to find a clinical trial, according to the Center of Information and Study on Clinical Research Participation. Meanwhile, trial sites across the country face delays because they need more participants.
The free CureLauncher service uses a patent-pending matching system to connect those with chronic disease to one or more of the nation’s 20,000 trials that are accepting participants.
By helping these two groups connect, the founders hope to not only help the more than 200 million Americans living with chronic diseases, but also help bring better treatments to the market faster.
Danielle Kaczor of Palm Bay considers herself lucky that when her 2-year-old daughter, Zoey, was diagnosed with leukemia in January, they happened to see a pediatric oncologist in Orlando who was heading a clinical trial for which Zoey was a match.
One month after her treatment started, Zoey’s cancer was in remission. Doctors say her chance of cure is 98 percent, Kaczor said.
“We feel very blessed,” Kaczor said. “Most families in our situation just don’t know these options are available.”
Across the country, 2.5 million Americans are enrolled in clinical trials; however, 1.1 million slots remain unfilled, Fuehrer said.
The few consumers who do know how to search out clinical trials find the process cumbersome and the methods limited.
Clinicaltrials.gov, a federal-government website, lists all clinical trials in the country. Users can search by disease and city.
“But the language is complicated, and knowing if you would be a good fit isn’t easy,” said Steve Goldner, CureLauncher co-founder and CEO.
Pharmaceutical companies also have matchmaking websites, but they only match patients to the drug company’s own trials.
At CureLauncher, relationship managers talk with patients interested in considering a trial. They then sort available options, find the most suitable matches and eliminate ones that aren’t a fit, Goldner said.
Staff members then summarize the choices, translate the medical jargon and coordinate appointments.
When a patient is connected with a program, CureLauncher gets paid a referral fee from the trial’s recruitment budget.
“We’re completely unbiased,” Fuehrer said. “We are not incented to recommend to any one study.”
‘You have to do this’
The idea for the matchmaking company occurred to Goldner last summer. While attending a wedding, he met a friend whose son was going blind from an incurable disease. The father knew Goldner had worked in the pharmaceutical industry, so he asked whether Goldner knew of any experimental treatments.
“I took out my phone and in five minutes gave him three studies going on in his town,” Goldner said. Afterward, he said, the father told him, “You have to do this for everybody.”
He took the challenge seriously. Two months later, Goldner met Fuehrer, who at age 36 has already survived two bouts of testicular cancer.
“After one lunch,” Fuehrer said, “I left a 10-year consulting job to do this.”
Both founders acknowledge that a trial is not for everyone, but it is an important option for those facing a disease.
Although the idea of trying an experimental treatment worries some, said Nemours’ Lang, most clinical trials are very safe.
“For human interventions, the drugs have first been tested in mammal models, then in healthy volunteers, then are evaluated by medical boards,” Lang said.
Still, not everyone qualifies, and not everyone will choose to go this route, Fuehrer said.
“But for those who do,” he said, “it’s a wonderful option when treatment isn’t working.”
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(c)2013 The Orlando Sentinel (Orlando, Fla.)
Barbara Jacoby is an award winning blogger that has contributed her writings to multiple online publications that have touched readers worldwide.