Cancer patients themselves are often the ones who seek out clinical trials, rather than waiting for doctors to refer them.
Who might benefit from a clinical trial for an experimental cancer treatment?
A common misperception is that such trials are strictly for patients who have reached the end of the road and have no more hope of being helped by standard treatments.
“But it’s not last-ditch,” said Dina Lansey, assistant director for diversity and inclusion in clinical research at the Johns Hopkins Kimmel Cancer Center in Baltimore, Md. New forms of immunotherapy are being tested in many types of cancer, and not just at late stages.
Doctors should head off the misunderstanding by routinely mentioning clinical trials early in a patient’s care as a possible option, Lansey said. That way, patients may be less likely to believe it is being sprung on them because hope has run out.
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“It’s less scary if you hear it early on,” she said.
Patients themselves are often the ones who seek out clinical trials, rather than waiting for doctors to refer them.
There are various ways to find clinical trials. Most major cancer centers post the trials in which they participate on their websites. But those listings will be limited to that hospital’s offerings. Other sites show more options.
The best known site is ClinicalTrials.gov, provided by the National Institutes of Health. It may seem daunting: It shows more than 50,000 studies of cancer, with some actively recruiting patients but others already finished or not yet open.
An easier approach may be a webpage of the National Cancer Institute, which also offers a toll-free phone number, 888-624-1937, that connects to a referral coordinator.
Other groups also have coordinators, or “navigators,” who can search databases to help patients find trials that are right for them. The process usually starts with patients filling out a questionnaire with information about their diagnosis and treatment history.
The Leukemia & Lymphoma Society offers help to people with those diseases at its website with a tab labeled “patients and caregivers” that leads to information about clinical trials. The group takes calls at 800-955-4572, Monday to Friday, 9 a.m. to 9 p.m., Eastern time, and accepts recorded messages outside those hours.
For immunotherapy trials for any type of cancer, the Cancer Research Institute can be reached at its website, or by telephone, 855-216-0127, Monday to Friday, 8:30 a.m. to 6 p.m., Eastern time.
The American Cancer Society can be reached on its website or at 800-303-5691, Monday to Friday, from 7:30 a.m. to 7 p.m., Central time.
Another group that can help with searches is EmergingMed.com, online or at 877-601-8601, 9 a.m. to 5 p.m., Monday to Friday, Eastern time.
Dr. Steven Rosenberg, who is chief of surgery at the National Cancer Institute and leads many clinical trials, said: “Fifteen years ago, more than 90 percent of our referrals came from doctors. Now, I would estimate that at least half of all our referrals come from patients themselves, who read about us on the internet and other places.”
People who are accepted into trials at the cancer institute will have all their expenses covered, including travel to Bethesda, Md. But patients themselves have to pay for their initial visit to be screened to see if they are eligible, Rosenberg said.