Most people have some concerns about taking part in a clinical trial, often because they’re not really sure what it will mean for them. Taking time to get as much information as you need before you decide is the best way to be sure that you will make the choice that is right for you. These are the commonly asked questions about mesothelioma clinical trials:
1- Is the clinical trial risky?
Yes, all clinical trials have risks. Every medical test, drug, or procedure has risks. The risk may be greater in a clinical trial because some aspects of any new treatment are unknown. This is especially true of phase I and II clinical trials, where the treatment has been studied in fewer people.
Perhaps a more important question is whether the risks are outweighed by the possible benefits. Since mesothelioma cancer is often a terminal disease with the current treatment modalities offering little hope in terms of cure, most victims are often willing to accept a certain amount of risk for a chance to be helped, but it is always important to be realistic about what this chance is. Ask your doctor to give you an idea of what the possible benefits are, and exactly what benefit is likely for you.
With this in mind, you can make a more informed decision. Some people may decide that any chance of being helped is worth the risk, while others may not. Others may be willing to take certain risks to help others.
2- Will I just be used as an experimental “guinea pig?”
There’s no denying that the ultimate purpose of a clinical trial is to answer a medical question. People who take part in clinical trials may need to do certain things or have certain tests done to stay in the study.
But this does not mean that you will not get excellent, compassionate care while in the study. In fact, most people enrolled in clinical trials appreciate the extra attention they get from their health care team. In 2005, the Coalition of Cancer Cooperative Groups surveyed over 1,700 people with cancer on their awareness and attitudes about clinical trials. Only a few had taken part in clinical trials. But most of those who did were very satisfied: 96% said they were treated with dignity and respect, 92% said they had a positive experience, and 91% would recommend that family or friends take part in a clinical trial if faced with cancer.
But this does not mean that you will not get excellent, compassionate care while in the study. In fact, most people enrolled in clinical trials appreciate the extra attention they get from their health care team. In 2005, the Coalition of Cancer Cooperative Groups surveyed over 1,700 people with cancer on their awareness and attitudes about clinical trials. Only a few had taken part in clinical trials. But most of those who did were very satisfied: 96% said they were treated with dignity and respect, 92% said they had a positive experience, and 91% would recommend that family or friends take part in a clinical trial if faced with cancer.
3- Will I get a placebo?
Most mesothelioma cancer clinical trials do not use placebos unless they are given along with an active drug. It would be unethical to give someone an inactive medicine as it would deny the mesothelioma victim of availing themselves of the available treatment for the cancer.
The very least you should expect from any clinical trial is to be offered the standard of care already being used.
4- Will my information be kept confidential?
As much as possible, all of your personal and medical information will be kept confidential. Of course, your health care team needs this information to give you with the best possible care, just as they would if you were not in a clinical trial.
Medical information that is important for the study, such as test results, is usually put on special forms and into computer databases. This is then given to the people who will analyze the study results. Your information is assigned a number or code ,your name is not on the forms or in the study database. Sometimes, members from the research team or from the Food and Drug Administration may need to look at your medical records to be sure the information they were given is correct. But your personal information is not given to them and is never used in any published study results.
