Cancer Rebels

How to Find a Clinical Trial: Questions and Tips for Cancer Patients

7-19-17 Cancer clinical trial 2
Dr. Antoni Ribas speaks with cancer patient Stew Scannell before Scannell receives an intravenous dose of Lambrolizumab during a promising cancer treatment clinical trial at UCLA Medical Center in Los Angeles, California August 19, 2013. David McNew/Reuters

Clinical trials aren’t for every cancer patient. But for some, experimental new treatments can provide hope for a better outcome than standard methods provide. Newsweek spoke with Dr. Sheila Prindiville—a medical oncologist and director of the National Cancer Institute’s (NCI) Coordinating Center for Clinical Trials—about some of the basics, like when cancer patients might want to consider clinical trials, where to look and how to evaluate what they find. She emphasizes that patients should always discuss information and options with their doctors. Edited excerpts follow.

Related: Cancer Clinical Trials: How New Search Tools Make it Easier for Patients to Find the Treatment They Need

What kinds of cancer patients are clinical trials for?

I think any patient that’s faced with a new diagnosis of cancer or that has a recurrence of their cancer should talk to their doctor to see if a clinical trial should be considered part of treatment plan.

What are some factors that go into deciding whether it should be part of the plan?

When a patient is diagnosed with cancer the doctor will present the options for treatment. There’s something we often refer to as the standard of care and then there often will be new drugs or new procedures that are being studied and compared to the standard of care. One would want to know if the option is out there. In particular there are times when a cancer has recurred and has not responded to standard treatments, one might want to know if there are new drugs or therapies that should be considered.

How do most cancer patients end up enrolling in a clinical trial? How has that changed in recent years?

I think most cancer patients find out about clinical trials from their doctor or their health care provider. With the advent of the Internet, patients also use the internet to connect with other patients and to find out more information about their cancer. In that process they likely come across information about the clinical trials that they may want to consider.

When should a patient or caregiver consider doing his or her own research?

That’s a good question. I think that that might vary from person to person. In general I think most patients’ care is guided by their health care provider. You might be directed to do some search on your own if that’s not mentioned.

The vast majority of patients don’t need to go onto a clinical trial. I think what you might be describing is a situation where perhaps a patient is facing a disease that might be recurrent or considered incurable. They may be then really looking to see what all is out there and what may be new and perhaps promising therapies when they know that the cancer they have may not be curable or may not have good long term outcomes. Doctors may be very busy in the course of providing treatment and information and may not have the time to sort through all of clinical trials that are out there. So I think looking for new promising treatments may drive people to look and to search for clinical trials. But again I think it’s always really important to take that information back to your doctor to put that information into context.

Where can cancer patients look for information on clinical trials they might want to participate in?

The NCI has a website with all the NCI-supported clinical trials that are taking place in the country. Patients can get help navigating the process through an online chat with a trained cancer specialist. For patients who don’t have Internet access they can also call 1-800-4-CANCER to speak with a live cancer specialist that can help them find clinical trials. Another resource would be NIH’s website which is ClinicalTrials.gov. That also contains trials for cancers as well as other diseases. There are other organizations, particularly cancer advocacy groups, that might provide information for a specific type of cancer. Cancer centers and clinics as well as drug companies may also have lists on their websites of clinical trials.

What are your tips for looking through and evaluating possible clinical trials?

I think one of the important things is to really know as much information about the specifics of their cancer, so that they can look to see if they would be eligible. Secondly, I think it’s important to look at where the study is located and the duration of the study. And then it’s very important for them to look at the purpose of the trial to see if that matches what they’re looking for. So, for example, is the purpose of the trial to cure the cancer? Or is the purpose to slow its growth and spread? Or is it to lessen the severity of the symptoms and side effects of treatment? They can read through some of this information and try to narrow it down, but that’s where I do think the doctors and/or healthcare providers can be very helpful.  

What should patients be careful of?

You might want to look at who’s sponsoring the trial and make sure the trial has had some scientific review.

How should a patient bring up clinical trials to their doctor?

The first conversation would be around what would be considered the standard of care and then if they wanted to consider alternatives, asking if there any clinical trials to consider of any new promising therapies that are being studied. You’re trying to understand what is the purpose or the objective of the study to see if it’s potentially going to offer some treatment that has the potential to improve the odds of beating this cancer.

Is there anything else a cancer patient should ask or keep in mind regarding clinical trials?

I think one of the questions that might be for your doctor or at least your insurance company is how would the cost of the clinical trial be covered? With a clinical trial, there are patient care costs and research costs. Patient care costs are those that are related to treating the cancer, whether you’re in a trial or not, and those are usually covered by insurance. Research costs, those are related to the new therapy or drug, are usually not covered by health insurance but are covered by the sponsor of the clinical trial. I think that’s something that patients want to make sure that they understand.