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.