Finding a cancer clinical trial for a loved one in 9 steps
Caregivers of people with cancer should consider enrolling their loved one in a cancer clinical trial for two reasons. First, it is an opportunity to be among the first in line to receive a new treatment. And second, it is a way to help develop future alternatives that might prevent and, who knows, even cure cancer – and since a risk factor for cancer is family history, this is something that close relatives should definitely be interested in. There are no guarantees, but most currently used methods to prevent, detect, and treat cancer did start as clinical trials. There are trials available for all stages of cancer, though some only accept people who have not been treated yet.
1. Understanding what a clinical trial is. A clinical trial is the culmination of a long research process that starts in the laboratory and ends with human testing. Trials entail both potential benefits and risks.
Risks and benefits of cancer clinical trials
· The new treatment may be not as, or less effective than standard therapies.
· Unexpected side effects.
· Additional doctor’s visits.
· Extra expenses.
· More tests.
· The new treatment may benefit other patients but not your loved one.
· Healthcare insurance may not cover all the costs.
· Access to a new treatment not available to people outside the trial.
· Close monitoring by a research team.
· Being among the first to benefit from a more effective treatment.
· Helping scientists learn more about cancer as well as helping other people with cancer.
2. Talking with your loved one’s doctor. Doctor, caregiver, and care receiver should discuss the above-mentioned possible risks and benefits. The physician can answer questions, and offer additional information.
3. Establishing eligibility. Even if your relative decides that the potential benefits outweigh the potential risks, there would still be the matter of whether he or she is eligible for a given clinical trial. The National Cancer Institute (NCI) has a checklist to help you determine which trials your loved one may be eligible for. Common eligibility criteria include having a certain type or stage of cancer, having received a certain type of treatment, not having received a certain type of treatment, belonging to a certain age group, medical history, and current health status.
4. Finding a clinical trial. There are several online resources to help you search for cancer clinical trials, such as:
· Research organizations that conduct clinical trials.
· Drug and biotechnology companies.
· Clinical trial listing services:
· Cancer advocacy groups.
5. Identifying potential clinical trials. In order to determine whether a cancer clinical trial might suit your loved one, you need to become acquainted with its protocol. The protocol is developed by the lead researcher and outlines what will happen during the trial. It can also help establish if patient and trial are a good match. The trial protocol may include this information:
· Eligibility criteria (including how many patients are needed).
· Which drugs will be given (including method of administration, dose, frequency).
· Tests to be performed and how often.
· Which data will be collected.
6. Contacting the clinical trial team. There are three methods to get in touch with the trial team:
· Directly through the phone number included in the trial summary.
· Having the patient’s doctor contact the trial team.
· Leaving your loved one’s contact info in the web site of a clinical trial listing service and waiting to be contacted.
7. Asking questions. There are several questions to ask a trial coordinator about a specific trial, some of which are listed below:
· Is the trial still open?
· Is your loved one eligible for this trial?
· Why do researchers think this new treatment might be more effective than the ones currently in use?
· What are the potential risks and benefits associated with this trial?
· Who will be in charge the care and safety of the patient?
· Are there copies of the trial's protocol document available?
· Is a copy of the informed consent document available (informed consent is a process through which the details about the trial are explained before deciding whether to participate)?
· Is there a chance that the patient will receive a placebo?
· Is the trial randomized (the patients are assigned to groups at random)?
· What is the dose and schedule of the treatments given in each phase of the trial?
· What costs will we or our health insurance plan have to pay?
· If there is travel involved, who will pay for travel and lodging?
· Will participation in this trial require more time than standard care?
· Will participation require a hospital stay?
· How will participating in this trial affect the patient’s daily living?
· How long will the trial last?
· What kinds of tests and treatments are involved?
· How will the doctor know if the treatment is working?
· How will the trial’s results be communicated?
· How long does the patient have to decide whether to join this trial?
· Is there someone to speak to about questions during and after the trial?
· Is there someone to talk to who has been in the trial?
· How will the patient’s health information be kept private?
· What happens if the patient decides to abandon the trial?
8. Talking with your loved one’s doctor (again). After going through each step, you and your relative should check back with the doctor to tie any loose ends, dot the I’s, cross the T’s, and so on and so forth. The doctor can give you a final professional opinion on whether a trial might do the care receiver good.
9. Making an appointment. If it’s all set that your relative with cancer is ready, willing, and able to participate in a cancer clinical trial, schedule an appointment with the trial team.