Is it possible that I could get a placebo (inactive) drug?
In some of our studies, it is possible that you may receive a placebo instead of the study drug. We do not want you to go without treatment, and for this reason we set up our trials to compare the study drug to what we call “treatment as usual” (or TAU). This means that you would continue to take the current standard of care drugs that are offered for your condition, but you would not receive the experimental study drug. Talk to your doctor before consider enrolling to understand the specific details of this, as each study is different.
What happens if my doctor asks me to participate? Do I have to enroll?
Absolutely not! It is completely your choice to participate in any research study or clinical trial. You are also able to change your mind at any point during the study and withdraw your participation if you choose. Your doctor may want to follow-up with you if you do decide to withdraw just to check on your wellbeing after discontinuing the study drug. That being said, with most of these specific trial drugs, you cannot receive the drug unless you participate in the study, so make sure you understand all of your treatment options before making any decisions about participating in or not participating in a clinical trial.
What if the study drug works for me? Can I continue taking it after the study finishes?
The answer is, sometimes! Some of our studies offer what is called an “Open Label Extension (OLE).” This means that, once your participation in the study has concluded, if you decide you want to continue taking the drug, you can sign a new consent form for the OLE to continue taking the drug for a longer period of time. The doctors would continue to monitor your health while in the OLE period, since the drug will likely still not be fully FDA-approved. Talk to your doctor to learn if this is an option for any clinical trial you enroll in.
What will it cost me?
This depends on the trial. Some of our trials fully cover the expenses of procedures for each patient. Some of the trials will require that you have insurance and will bill procedures to your insurance company. Some trials may cover some costs, but will bill some to your insurance as well. Prior to your enrollment in any study or trial, a breakdown of any expenses for you will be provided to you to ensure you are able to make a fully informed decision regarding participation.