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Some patients may have the option to join a clinical trial, also known as a research study. Clinical trials can help improve outcomes for patients. They can also help doctors make important discoveries. These discoveries may help future patients.

If you have the option to join a clinical trial, your doctor or research nurse will tell you about:

  • Who is doing the study
  • Purpose of the study (what they’re trying to learn)
  • What the treatment and tests are
  • The risks and benefits 
  • Other treatment options available to you
  • Your rights as a patient

Make sure you ask questions so you understand the clinical trial process. If you decide to join the trial, the doctor or research nurse will talk to you about the process and ask you to sign a consent form (agreement). You will never be part of a clinical trial without your signed agreement.

What is a clinical trial?

A clinical trial is a way to gather information about how well a specific treatment or test for a disease works and what the side effects could be. Some trials are done to learn how well a new medicine works. Others are done to see if one treatment works better than another. Other trials look at a new test to see if it helps doctors better care for patients.

When a medicine or treatment is part of a clinical trial it doesn’t always mean it’s unproven or has never been tested, but in some cases that may be true.

  • Find a clinical trial
  • Read results of recent studies

Clinical trials may:

  • Look at a new use for a well-understood medicine that’s given for other purposes
  • Test 2 different but well-known ways to do transplant to see if one is better than the other
  • Study the side effects and safety of a new treatment
  • See if a new test helps doctors diagnose complications earlier

Your rights and safety

Clinical trials must follow strict rules to keep patients safe. In the U.S., clinical trials are checked by the Office of Human Research Protections (OHRP). Sometimes they’re also checked by the Food and Drug Administration (FDA). An Institutional Review Board (IRB) watches each clinical trial closely. The IRB reviews the trial to make sure that it is ethical (the expected benefit of the study outweighs the potential risks) and that the rights of people who join are protected.

Throughout the trial, researchers report to the OHRP, FDA and IRB. The trial can be shut down at any time to protect the people in it. They will stop the trial if any unexpected risks are found, such as dangerous side effects.

The FDA and the OHRP also make sure patients give informed consent before joining a clinical trial. Joining a clinical trial is voluntary. If you’re uncomfortable joining a trial, tell your doctor. Your doctor and health care team will take good care of you whether or not you decide to participate in a clinical trial.

Jason Carter Clinical Trials Program

Finding clinical trials can be challenging. The Jason Carter Clinical Trials Program was created to help patients with blood cancers or blood disorders and their families find and join clinical trials. Funding was provided by the Carter family, in memory of their son and brother, Jason Carter. 

This tool searches clinicaltrials.gov for trials that are:

  • U.S. based
  • Recruiting participants
  • Testing an intervention or treatment
  • Phase 1, 2, and 3
  • For blood cancers, blood disorders, complications from blood or marrow transplant, such as graft-versus-host disease (GVHD), and Inherited immune system or metabolic diseases

To search for clinical trials, visit JCCTP.org.

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