MPN Clinical Trials: What to Expect

Clinical trials are research programs conducted with patients to evaluate a new medical treatment, drug, or device. Clinical studies help bridge research and patient care through the evaluation of therapies, drugs and diagnostic tools and can even lead to medical breakthroughs. Both patients and medical researchers benefit from clinical trials. 

As a clinical trial participant, you can expect to:

  • Gain access to quality medical care and medications not widely available.
  • Positively impact the health of millions.
  • Improve and educate yourself about your own health.
  • Possibly receive financial compensation for time and travel.

 

Should you participate in a clinical trial?
Participating in a clinical trial is a personal decision. You have no obligation to participate and it’s not right for everyone. It’s important to note that by the time a treatment reaches the stage of recruiting patients, it’s undergone years of research and has been rigorously tested in preclinical settings. Consider the following steps to make your decision:

Talk with your hematologist.
Your hematologist can let you know about any appropriate trials based on your diagnosis and treatment history and answer many questions you may have.

Make an informed decision.
Everyone considering participating in a study is asked to review an informational document called an informed consent form. The form provides key facts about the study to help you decide if participating is right for you. You must sign the informed consent form in order to participate in the study, however it is not a contract—you may still choose to leave the study at any time.

Have a conversation with your family and friends.
Talk to your family members and close friends about the possible medical and lifestyle impact of  clinical trial participation. Share the information you’ve learned about your options and encourage your family and friends to ask questions as well.

Consider costs, time and logistics issues.
Depending on the study, there may be costs and logistical considerations. Make sure you and your caregivers have a plan to ensure that your care is uninterrupted. 

Understand the risks and benefits.
All medical research involves some level of risk to participants. Risks and benefits vary depending on the study. To help you make an informed decision, the study team is required to tell you about all known risks, benefits and available alternative healthcare options.

Ask questions.
If you have questions when deciding to join a research study or at any time during it, ask a member of the study team.

Recognize that you will need to be actively involved.
Being part of a clinical trial requires a personal commitment of time and energy. It may mean more tests and doctor appointments.

Privacy is a concern for many people who are considering becoming part of a clinical trial. There are several systems in place to ensure your privacy.

What you need to know about privacy and security.

  • All clinical trials must be checked and approved by an institutional review board (IRB) or an ethics committee (EC) for they begin. 
  • As a clinical study participant, you are anonymous. No members of the research team can talk about your participation without you agreeing to it first.
  • Any personal information collected about you is confidential both during and after the study. 
  • Your name will not be listed in connection to any reports about the study.

Every clinical trial has its own protocol and may require different types of procedures along the way. Visit the MPN Research Foundation to learn more about what to expect and where to find clinical trials.

 

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