People with all types and risk levels of myeloproliferative neoplasms (MPNs) may be eligible to participate in clinical trials. MPNs are a rare group of blood cancers that develop when bone marrow does not function correctly. Research studies offer a way to test new drugs and diagnostic tests for diseases like MPNs to improve treatment outcomes and quality of life. Talking to your doctor can help you understand if participating in research is a good fit for you.

MPNs are relatively rare. Between 2013 and 2017, there were 61,572 new cases of MPNs diagnosed in the U.S. — an average of 12,314 cases per year. In the U.K., there are an estimated 1,900 new cases yearly.

Currently, there are various treatments for myeloproliferative neoplasms, including phlebotomy, chemotherapy, and targeted medications like Janus kinase (JAK) inhibitors. The specific treatment recommended for you will depend on several factors, such as your overall health and any genetic mutations present on your cancer cells.

There are also a number of ongoing clinical trials to study new treatments and new ways of using existing treatments for MPNs. Some MPN clinical trials evaluate treatments that doctors are not yet able to prescribe. These are known as investigational treatments.

Eligibility for MPN Research

Your doctor can help you understand if a clinical trial is a good option for you. They can also help you identify research studies for which you may be eligible. The MPN Research Foundation provides a tool for assessing your eligibility for different clinical trials. You can also search for MPN clinical trials in the U.S. Food and Drug Administration (FDA) database at clinicaltrials.gov

The following factors may impact your eligibility for participation in a clinical trial:

• Type of MPN — Some trials are only for people with one type of MPN. Other trials include multiple types of MPNs, like primary myelofibrosis, polycythemia vera, essential thrombocythemia, or secondary myelofibrosis (myelofibrosis after polycythemia vera or essential thrombocythemia).
• Stage or mutations— Eligibility for a specific research study may depend on details about your MPN, such as stage or which genetic mutations are present.
• Risk level — Some trials focus on cases of MPNs that are considered to be high-risk while others include low-risk cases.
• Medication and treatment history — Depending on the trial, your eligibility may depend on which treatments you have received for your MPN in the past.

Choosing To Participate in Research

The decision to participate in a research study is personal and may involve important conversations with your family members. It can be helpful to understand how clinical trials work when you consider if participation is a good choice for you.

Your doctor is an important resource when thinking through your options. Expertise in MPNs, an understanding of your medical history, and knowledge of the latest news and research make your doctor your best partner in decisions relating to your treatment.

Even if you choose to enroll in a research study, it’s important to stay connected with your existing health care providers. They will remain the experts on your individual medical history and needs.

The guide below can help you start a discussion with your doctor about clinical trials for MPNs. Bring it with you to your next appointment if you think you may be interested in participating in a clinical trial.

Questions for Your Doctor

You may have lots of questions about research studies, especially if this is the first time you’ve discussed clinical trials with your doctor. Below are some questions to get the conversation about research started.

Questions About Your Health

It can be helpful to understand your particular health status to determine if a research study is something you’d like to consider. You can ask:

• Is my MPN considered low risk or high risk for progression?
• How well is my current treatment plan working to control my MPN?
• Would you recommend I consider a clinical trial?
• If you don’t recommend a clinical trial now, what changes in my condition would make you more likely to recommend that I join a study?

General Questions About Clinical Trials

Your doctor is a good resource for learning about research. They can recommend additional resources that may be available to you through your hospital system. You can ask:

• Are you involved in any clinical trials for MPNs?
• Do you know of any trials that would be a good fit for me?
• If I choose to participate in a clinical trial, how would my participation impact my care with you?
• What are the different types of clinical trials?

Considering Participation in a Specific Clinical Study

If you are considering a specific trial, you will be given lots of information about the study. This is to ensure that you can provide informed consent to participate in research. You can review this information with the trial coordinators, your family members, your doctor, and anyone else who helps you make decisions.

You can ask your doctor:

• What phase is this clinical trial?
• Is there a possibility that I will receive a placebo?
• What is known about the side effects and benefits of the treatment being studied?
• What are my potential risks and benefits for participating in this clinical trial versus continuing my current treatment plan?
• What is the likelihood my condition will improve if I join this research study?
• Will I be able to access the investigational treatment after the clinical trial is complete?
• What costs am I responsible for if I join this clinical trial? Who pays for the treatment?
• How often will I have appointments? Will I need extra procedures or scans?
• Will I need to travel to a major cancer center far from my home?

Do you have myelofibrosis? You may be eligible for an upcoming clinical trial. Find out if you’re a good candidate.

Talk With Others Who Understand

On myMPNteam, the social network for people with MPNs and their loved ones, members come together to ask questions, give advice, and share their stories with others who understand life with MPNs.

Have you considered a clinical trial for MPN treatment? Share your experience in the comments below, or start a conversation by posting on your Activities page.