About Being a Study Participant or Volunteer FAQ

Listed below are common questions asked about participating in clinical trials. If you have questions regarding a specific trial, use the contact information provided in the study listing.

Where do I find clinical trials that are recruiting?

Advertising for clinical trials can be found in several different places including on the radio, television, through advertising efforts in print publications, and community common areas such as waiting rooms. You can also ask your physician if s/he is conducting any studies or if they know of any colleagues who are. Generic search engines may yield some results or you can use those that are dedicated to clinical trials such as ClinicalTrials.gov.

What are the benefits of participating?

By participating in a clinical trial, you are taking an active role in your own health care and contributing to the betterment of health care for others. For some participants, clinical trials offer exposure to new treatment methods that are not otherwise available. Participating in a clinical trial can also be very beneficial for those who struggle to find ways to effectively control or manage their disease.

Can anyone participate?

The main goal of a clinical trial is to study a predetermined research question. In order to effectively pursue an answer to that question, researchers create a list of criteria that study participants must meet in order to be considered for the study. These criteria are put in place not only to ensure that the end results of the trial are being targeted toward a specific result, but also to keep participants safe.

What does being a participant involve?

The processes involved from one study to another will vary. Things you could be asked to do include: filling out questionnaires, taking an experimental drug, undergoing a new therapy, using a newly-designed device, regular meetings with doctors or researchers, or changing your lifestyle. Participants could be asked to do one or any combination of these things, but each study will have a predetermined set of responsibilities that must be agreed upon to participate in the study. All of these details will be outlined and explained in the study protocol which is given to participants as one of the first steps.

Is it safe to be a study participant?

Researchers and the IRB (Institutional Review Board) affiliated with the study work to ensure that the study is conducted in the safest way possible. However, depending on the study there may be some risks involved. These risks will be explained to you before the study begins and if any new risks are discovered, researchers will notify you and ask if you wish to continue to participate in the study. If at any time you feel that participating in the study is unsafe, you may address your concerns with the researcher and discontinue your participation.

Will I get paid?

Some studies offer payment for participation, others compensate participants for their time and expenses such as parking, while some may not have the funds to pay participants at all. Your motivations for participating in a clinical trial should not involve taking risks you wouldn't normally to receive payment. The terms of payment will be explained before beginning participation.

Does it cost me anything?

Just as not all trials offer payment for participation, not all trials come at no cost to the participant. It is important to direct all questions about cost to the researcher including (if applicable) any costs that may be billed to your insurance. In addition to verifying this with the research team, you should discuss concerns about cost with your insurance provider.

Will I still see my regular doctor?

Since most clinical trials are a short-term commitment you should continue to work with your primary care physician. Including your physician in your plans to participate in a trial is beneficial for you to prevent any possible side effects or adverse reactions occurring as a result of your current treatment plan being combined with the study protocol. Your doctor will also have a better idea of whether or not participating in the study could be helpful or harmful for you.

Am I allowed to leave the study?

Participants are allowed to leave a study at any time, no questions asked. If you have concerns prior to leaving a study, you should address them with the researchers before terminating your participation. Whether you choose to leave the study or not is your choice and you shouldn't be pressured into making your decision. However, if you do decide to leave the study, explaining your reasons for leaving to the researcher could further contribute to the research process.

What happens with my information?

Researchers collect participant's information to inform and enhance their research. Before agreeing to participate, you will have to sign a consent form that states you agree to share your information with the research team. Though you are releasing your information to the researchers, your personal health information will remain confidential and protected by HIPPA guidelines. HIPPA ensures that all of your identifying information such as name, date of birth, SSN, address, etc. are concealed and only referenced when absolutely necessary by a health care professional. This information will never be published with study results and no one will know you're participating in the study unless you tell them.