Understand your clinical trial options

Information and support for patients and their loved ones

You may have the option to join a clinical trial as part of your treatment for a blood cancer, blood disorder or complication after a blood or marrow transplant, like graft-versus-host disease (GVHD). But learning about or finding a clinical trial can feel daunting. No one is born knowing how to navigate the complex world of clinical trials—and it's definitely not taught in school.

That's why we're here to help. You'll get answers to questions like, "What is a clinical trial?" and "What should I know before participating in a clinical trial?"

Explore the page, but know that you don't have to figure out clinical trials alone. Our NMDP℠ clinical trials navigators are here to support you. There's no cost to talk to a navigator. Help is available in English and Spanish.

Call or text: 1 (888) 301-4650
Email: patientinfo@nmdp.org
Request a connection

What is a clinical trial?

A clinical trial is a type of research study. It tests how well a treatment works and what the side effects may be. Clinical trials help doctors find better ways to treat blood cancers and blood disorders.

Clinical trials may:

Look at a new use for an existing medication or treatment
Compare 2 treatments to see if one works better
Study the side effects and safety of a new treatment
See if a new test helps doctors find and treat problems earlier

Before you agree to join a trial, you'll meet with the study team. They'll talk with you about the facts, the risks, the benefits and what to expect. This is part of the informed consent process. You'll only join a trial if you agree to it.

Being part of a clinical trial won't affect your quality of care. Your doctor and health care team will take good care of you whether or not you decide to join a trial.

You’re always encouraged to ask your doctor or the study team questions.

You can also reach out to an NMDP clinical trials navigator if you have questions about a clinical trial related to a blood cancer or blood disorder diagnosis. To talk to a navigator, call or text 1 (888) 301-4650, email patientinfo@nmdp.org or request a connection.

How a clinical trial made a transplant possible for Amelia

Like many people who need a blood or marrow transplant (also known as a BMT, bone marrow transplant, stem cell transplant or SCT), Amelia didn’t have a fully matched donor.

In the past, that meant she likely couldn't have a transplant or her outcome could be poor if she did.

She enrolled in an NMDP-sponsored, CIBMTR^® (Center for International Blood and Marrow Transplant Research^®)-led clinical trial that's helping doctors use partially matched donors safely.

Read Amelia's story

BMT recipient, Amelia, is a child wearing a peach-colored hat, pink shirt and glasses. She’s hugging a fuzzy teddy bear and looking at the camera.

Amelia, clinical trial participant and transplant recipient

What should I know when considering a clinical trial?

You probably have a lot of questions. That's normal. Below are answers to the questions patients and their loved ones ask us most about clinical trials related to a blood cancer or blood disorder diagnosis.

Every person's situation is different. A clinical trial may be a possibility at several points in your treatment journey.

For example, it could be an option before you have a blood or marrow transplant (also known as a bone marrow transplant, BMT, stem cell transplant or SCT) or as part of your transplant.

You might be able to join a clinical trial after transplant that's studying treatments for complications like graft-versus-host disease (GVHD).

Or you might be able to participate in a clinical trial for newer treatments for some blood cancers, like chimeric antigen receptor T-cell (CAR-T) therapy.

These are a few of many examples. Ask your doctor if a clinical trial could be right for you. They know your health history and can help you weigh the benefits and risks. You can also talk to an NMDP clinical trials navigator.

If you're not sure what to ask your doctor, this list may help: Questions to ask your doctor about clinical trials.
Finding a clinical trial, joining it and starting treatment could take anywhere from a few weeks to several months. Here are some of the key steps:
1. Gather information about your diagnosis. You'll need to know some specific information like:
If you don't know all of this, check your medical records or ask your doctor.
1. Talk to your doctor. Have a conversation with your doctor about your interest in joining a clinical trial. They can talk through the benefits and risks of different clinical trials and help you decide on the best option.
  
  You can also search for clinical trials on your own through the ClinicalTrials.gov website. You can narrow down your search by your condition or disease, location of the clinical trial and much more. Be sure to talk to your doctor about what you find.
2. Talk with the study team. If you want to move forward, your doctor can help you contact the study team. They can help you understand the treatment and gather any needed medical records.
3. Talk with your insurance company. Before you join a trial, ask your insurance company to help you figure out if there are costs you'll need to pay. There may also be travel costs.
The process can feel complex. But our clinical trials navigators can answer your questions and point you in the right direction.
The answer is more complicated than yes or no. Here's how it usually works.

The clinical trial sponsor pays for the specific treatment that they're studying.

But you may also get standard care in the trial. Standard care could include X-rays, blood draws or medicines that doctors regularly use to treat your diagnosis.

If you get standard care in a clinical trial, your insurance company usually gets a bill. The health insurance plan you have will determine if your insurance will pay for it.

Before you join a trial, talk to your insurance company. They can help you find out what they'll pay for and what you'll pay for yourself.

If the clinical trial location isn't nearby, you may have travel costs. NMDP offers a clinical trial travel grant that can help some patients with these expenses.
If you’re joining a clinical trial for an allogeneic transplant (your blood stem cells come from a donor), you might qualify for a grant from NMDP.

The clinical trials travel grant helps cover some of the costs if you have to travel to a different hospital or clinic to join the trial.

Learn more about patient financial assistance from NMDP.
A clinical trial may give you access to a new treatment before it's widely available. But there are also risks. The new treatment may not work as well as doctors hope. It may have side effects that doctors don't expect.

Your doctor and the study team will talk with you about the benefits and risks before you decide to join. This is part of informed consent.

You should also know that clinical trials in the United States follow strict rules to keep patients safe.

Throughout the trial, researchers report to the Office of Human Research Protections, Food and Drug Administration (FDA) and Institutional Review Board (IRB).

The trial can be shut down at any time to protect the people in it. It will be stopped if there’s any unexpected harm, such as dangerous side effects.

You have important rights when you join a clinical trial.

These include the right to:
- Learn about the trial in a way you can understand.
- Not join. If you're uncomfortable, tell your doctor. Your health care team must take good care of you whether or not you join a trial.
- Leave at any time. Even after you've joined, you can quit. You don't have to give a reason.
- Privacy protection. Your doctors will talk with you about what information will be collected and how it may be shared.
Want to learn more?

You can access About Research Participation from the U.S. Department of Health and Human Services. It has videos, tips and questions to ask before you join a study. NMDP shares this as a helpful resource only.
Yes. You can leave a clinical trial at any time. You don't have to give a reason. Your health care team will still take good care of you. Joining—and staying in—a trial is always your choice.
Informed consent is an ongoing process that helps you understand a treatment or clinical trial. It helps you make informed decisions about your participation and care. It's not just a form you sign.

During this process, you and the study coordinator will talk about:
- The clinical trial’s purpose
- Possible benefits and harms
- Other treatment options you may have
- Your rights as a participant
- Any other questions or concerns you have
Joining a trial is your choice. You don't have to do anything you're not comfortable with.
Clinical trial phases show how far along a trial is in the research process. The Food and Drug Administration (FDA) requires most new treatments to go through 3 phases before they are approved.
- Phase 1: Is the treatment safe? When a phase 1 trial shows benefits, it moves to phase 2.
- Phase 2: Does the treatment work? When a phase 2 trial shows benefits, it moves to phase 3.
- Phase 3: Is the treatment better than the standard treatment? You may be assigned to get either the new treatment or the current one. You and your doctor won't know which one. This makes sure treatments are compared fairly.
When a phase 3 trial shows benefits, the FDA may approve it. This means other patients can get the treatment without being in a trial.

Watch this video from the National Cancer Institute to learn more: What are clinical trial phases?

Get help from an NMDP clinical trials navigator

Our navigators are here to help you find and join clinical trials for a blood cancer or blood disorder. If you have trouble finding a trial, have questions about a specific trial or want more information about the clinical trials process, don’t hesitate to reach out.

Call or text: 1 (888) 301-4650 | Email: patientinfo@nmdp.org

Request a connection

Who you’ll connect with

Evelyn Bravo, a bilingual clinical trials navigator at NMDP.

Evelyn Bravo, MA, ACS LION
NMDP Clinical Trials Navigator (bilingual in English and Spanish)

Evelyn joined the NMDP Patient Support Center in 2020. She began providing clinical trials navigation support in 2022.

Prior to joining NMDP, Evelyn worked at Northside Hospital-Atlanta, where she provided medical interpretation, support and advocacy for patients and families on the blood and marrow transplant unit. She’s nationally certified as a patient navigator.

Brenna O'Brien, a clinical trials navigator at NMDP.

Brenna O'Brien, MPH, RN, ONN-CG
NMDP Clinical Trials Navigator

Brenna joined the NMDP Patient Support Center in 2017. She began providing clinical trials navigation support in 2020.

Prior to joining NMDP, Brenna worked as an inpatient nurse on the adult blood and marrow transplant unit at the University of Minnesota. She’s also certified as an oncology nurse navigator.

Jason's story: finding clinical trials when it mattered most

Five members of the Carter family looking at the camera and smiling. They're each wearing a white, short-sleeved shirt and jeans.

Jason Carter, far right, with his family

When Jason Carter was diagnosed with leukemia, his family learned how hard it was to find clinical trials. They spent hours searching on their own, trying to understand which trials might help. He joined 2 clinical trials that gave him more time with the people he loved.

After he passed away, his parents wanted to make sure no other family had to navigate that search alone. Their gift to NMDP helped build the clinical trial navigation support that patients and families use today—free, personal help from people who understand the clinical trial search process.

Read Jason's full story

NMDP research and clinical trials

NMDP leads research to help more people have a blood or marrow transplant and live well after transplant. Through CIBMTR, which is a research partnership between the Medical College of Wisconsin^® and NMDP, we conduct clinical trials and studies that lead to better treatments.

Learn more about how research at NMDP is advancing transplant science
Explore the NMDP Donor for All initiative and clinical trials that are expanding access to transplant
Read easy-to-understand summaries of some CIBMTR research studies

Guidance and support throughout your journey

As you navigate your treatment experience, our Patient Support Center team is here to help you and your loved ones with education, guidance and emotional support that's tailored to you. There's never a cost.

Get in touch with a patient navigator

No matter where you are in your treatment journey, our patient navigators are here for you, your caregiver and your loved ones.

Our team understands the ups and downs you may experience. Our goal is to answer your questions, help you get the information you need and offer guidance that's tailored to you.

Explore services

Receive counseling and emotional support

Our NMDP social workers can help you and your caregiver through our NMDP Patient and Caregiver Emotional Support (PACES) program.

They offer free, short-term virtual counseling and support. They can help you navigate emotional and mental health challenges throughout your transplant journey for a blood cancer or blood disorder.

Get emotional support

Talk to someone who’s been through transplant

For many people, it can help to talk to someone who's already been through the transplant experience.

Our NMDP Peer Connect volunteers are patients and caregivers who understand what you're going through.

They'll listen, answer your questions and share their own experience.

Connect with a peer

Understand your clinical trial options

Information and support for patients and their loved ones

On this page

What is a clinical trial?

How a clinical trial made a transplant possible for Amelia

What should I know when considering a clinical trial?