If you're interested in the possibility of a clinical trial as a treatment option, talk with your doctor first. He or she can help you find an eligible trial.
You can also contact one of The Leukemia & Lymphoma Society's (LLS's) Information Specialists for help in finding an appropriate clinical trial. We can help you identify the information you need about your diagnosis and treatment history to determine eligible trials. We can also help you develop a list of questions to ask your doctor or the trial team about participating in a trial.
Contacting the Trial Team
If your doctor agrees that a clinical trial is a good option, he or she can contact the trial team, which will ask many questions related to your medical and treatment history to determine if the trial is right for you.
At times, you may need to contact the trial team yourself about participating if your doctor is unable to. If this is the case, an LLS information specialist can help guide you and suggest what to ask the trial team.
When you contact a member of the trial team, ask to speak with the study coordinator, the referral coordinator or the protocol assistant.
The study coordinator answers your and your doctor's questions. He or she will make preliminary assessment of your eligibility for the trial. After your initial appointment with the coordinator, he or she decides whether you'll be accepted to participate in the clinical trial.
When you first express interest in a clinical trial, a process called informed consent begins. Informed consent is the term used to describe the ongoing sharing of information by the trial team before, during and after the clinical trial.
To start the process, the clinical trial team gives you an informed consent document with detailed written information about the trial, and the doctors and nurses involved in the trial can explain the study to help you decide if you want to participate. You'll be encouraged to ask questions so you have all the information you need to make a decision about participating. (A language interpreter is provided for people who request one.)
You will be given time to review the clinical trial details in the informed consent document.
Once you and the trial team are satisfied that you understand the clinical trial protocol (procedures), you must agree to sign an informed consent document before you can begin. It affirms that you fully understand the nature of the study. The informed consent document is not a contract; you're free to leave the study if any new information leads you to want to do so. In fact, you're free to leave the study at any time, for any reason.
New information may become available to the research team as the trial goes along. The clinical trial protocol may also change over time. The informed consent process requires that members of the research team update you as such changes are made. You may also be asked to sign a new informed consent document.