Desperation — over a frightening diagnosis or over treatment that no longer works — is what usually prompts a patient to search for a clinical trial. But finding the right one can be as difficult and stressful as learning a new language in old age.
“In an ideal world, all that should be necessary is for a patient to contact a cancer center and ask for whatever clinical trial is going on for that particular cancer,” says Dr. Michael Samuels, a radiation oncologist and medical director of the University of Miami/ Sylvester Clinical Research Services. “Staff would supply information and there would be a match.”
But the world of complex medical research is far from ideal, especially for the layman. Very few patients or family members know how to find a study that may provide an alternative to traditional care. In fact, the Center for Information and Study on Clinical Research Participation, a Boston-based non profit dedicated to educating the public about the importance of clinical research, estimates that only 4 percent of people work through the maze of ongoing trials. On the other end, clinical trials are sometimes delayed because of researchers’ inability to find enough participants.
Mark Kohl, a Tavernier attorney, is participating in a clinical trial at UM’s Sylvester Comprehensive Cancer Center comparing the side effects of two different chemotherapy drugs on throat cancer patients. His oncologist there told him about an associate’s study.
“I wouldn’t have thought to do it otherwise,” Kohl, 57, says. “I feel fortunate that my doctor mentioned it to me.”
Now, two men — one a forensic toxicologist, the other a two-time cancer survivor — have started a website they hope will be the eHarmony of the clinical research world. The 8-month-old CureLauncher.com matches Americans who are diagnosed with chronic diseases to the more than 5,000 clinical trials looking for patients, at no cost to the patient. The website makes its money by charging clinical trial sites a fee, usually paid out of the researchers’ media advertising budget.
CureLauncher estimates that there are more than 880 clinical trials in the Miami area and about 2,320 in Florida alone. Though CureLauncher has not yet referred a patient to Samuels’ staff, the UM doctor says, “The site is on to something” by addressing the wide gap between researcher and participant.
“The idea,” says Steve Goldner, CureLauncher Chairman and CEO, “is to help people figure out the clinical trials they qualify for and also to bring cures to the market faster.”
There are other websites that try to bring patient and researchers together, including researchmatch.org and centerwatch.com. And UM has a search tool on its UHealth website, http://uhealthsystem.com/clinical-trials, as does the federal government, clinicaltrials.gov.
But CureLauncher tries to go a step further by actually doing the legwork for the patient. The site employs what they call “relationship managers” who fill out a questionnaire with the patient. Once that information is used to narrow down the potential clinical sites, CureLauncher makes the appointment, whether it’s for a phone or an in-person interview. If the initial match doesn’t work out, CureLauncher will continue looking for another match for the participant.
Goldner, a toxicologist who has conducted his own clinical trials and worked in the medical field for about 30 years, says the site “empowers patients. We give them choices in common, everyday language they can understand.”
CureLauncher President David Fuehrer says his family’s medical history is proof that such a service is needed. A two-time testicular cancer survivor, he lost his father to bladder cancer a year ago, three weeks after the attending physician suggested the elder Fuehrer might benefit from a clinical trial. By that time, however, it was too late for him to find or participate in a research study.
A couple of months later, Fuehrer sat in a boardroom where Goldner was making a pitch for financial backing. Within a month Fuehrer, who has managed new products at Pfizer, General Electric and Dow Solar, had quit his job and joined Goldner.
“It was too unbelievable for me that so soon after what happened to my father, he came in to talk about this,” Fuehrer recalls. “No one should lose a father, a son, a spouse without the opportunity of benefiting from a clinical trial.”
Many of the patients who have enrolled with CureLauncher suffer from some form of cancer, mostly breast, prostrate or leukemia. But Goldner notes that the site also has gotten requests for trial information on diabetes, psoriasis and congestive heart disease.
With tens of millions of Americans dealing with chronic diseases, clinical trials are an essential part of the way science discovers cures and safe treatments. Usually conducted at hospitals, medical schools and other research facilities, these trials tend to be good for participants, too. Research has shown that clinical trial patients, even those who receive a placebo, tend to do better than others going the traditional route for the same condition. This could be because of the constant monitoring by the clinical trial team, researchers speculate.
Kohl, the Tavernier attorney, feels he is getting extra attention as a trial participant. Being part of an experiment has also saved him money because he didn’t pay for the cost of chemotherapy drugs. And there was an added benefit, a contribution to science: “I feel my experience could assist other people who might go through the same thing.”
UM’s Samuels says the South Florida area is “well served” by research studies because of both its universities and medical facilities. However, patients may not know about these opportunities.
“A majority of physicians in the community don’t tell patients about the possibility of a trial,” he adds. “In addition, it’s a complicated system and the information out there is for medical health professionals, not for patients.”
Even when a patient finds an open clinical trial, she might not meet the pre-requisites for the study. In such cases, researchers don’t necessarily refer a patient to other trials. CureLauncher, Samuels says, tries to address such issues.
“I’m in favor of any method of getting more patients enrolled in clinical trials,” he adds. “I think doing so benefits current patients, future patients and the process of scientific discovery. CureLauncher’s program has the potential to bring additional patients into the clinical trial process and that would be very positive.”