What are pros and cons of being in a trial?

I went to different consultants and both agreed. Instead of stem cell I should try the clinical trial.

Clinical trial staff have to consider many factors when recruiting. Some people will not qualify and that has no reflection on the person. If you do qualify, there are many benefits for you, your community, and everyone’s health.

Click a question below to learn more:

What are the benefits of participating in a clinical trial?

Click on this video to hear a real story about why someone decided to take part in a clinical trial.

There are many reasons to take part in a clinical trial. Some reasons are:

  • It could benefit to you and your health.
  • It could help others, including your family, friends, and community. Your participation could:
    • Help researchers learn why some people are more likely to get certain diseases.
    • Help researchers learn why some medications do not work well for everyone.
  • It could help society by helping researchers save the lives of people in the future.

Note:

  • If you decide to join a clinical trial, research staff will talk to you about the benefits of taking part in that study.

How does the study affect my care?

Click on this video to hear a real story about how a person’s participation in a clinical trial did not affect their disease treatment. Click here to read a transcript instead.

Some people take part in a clinical trial because of a disease or illness. If this is the case for you, you may wonder how participating will affect your care. Taking part in a study will NOT:

  • Affect your diagnosis
  • Affect the treatment you need to be healthy
  • Change the quality of your medical care
  • Deny you care at the medical institution
  • Change your relationship with your doctor

 

Read the NIH Clinical Center’s Patient Bill of Rights

What is the downside to participating in a study?

Click on this video to hear a real story about why a person decided not to take part in a clinical trial.

People can decide not to take part in a clinical trial. Some things to consider when making that decision include:

  • Risks specific to that study
  • How long a person needs to take part in the study
  • Where the appointments are

Note:

  • You may feel more comfortable sticking with your routine care
  • You may have concern about the accidental release of your personal information. Every study must have security measures to prevent this from happening
  • Risks are different for each study. A recruiter will discuss these with you.

What are my rights as a research participant?

Click on this video to hear a real story about safety and ethics in clinical trials.

Your rights are to:

  • Be treated with respect.
  • Be fully informed in different aspects of your treatment plan.
  • Decide not to take part in a study.
  • Leave a study at any time.
  • Ask for information in the language of your choice or ask someone to help you interpret.

Note:

  • These are your rights whether you choose to take part in a study or not.
  • Those with special needs can receive assistance.

Read the NIH Clinical Center’s Patient Bill of Rights

Can I change my mind?

Click on this video to hear a real story about safety and ethics in clinical trials.

  • You can choose to take part in a study, or you may choose not to be part of a study.
  • You can decide to leave a study at any time.
  • It is important to talk to you doctor about your concerns before leaving a study. Your doctor can tell you about any medical risks due to leaving a study.
  • If you change your mind in the middle of a study:
    • The consent form has details on how to leave the study, including a telephone number. [You get a consent form when a researcher explains the study to you. You have to sign a consent form before you join a study.]
    • Research staff can also help you leave a study.

 

Read the NIH Clinical Center’s Patient Bill of Rights

If I decide to participate in a study, what happens next?

Click on this video to hear a real story about the clinical trial process.

Once a person decides to take part in a clinical trial, they may wonder what comes next. You can expect a few things:

  • You will need to give your signature or verbal permission to show that you agree to participate. You will also need to give this permission to show that you know your rights and role in the study. These are what make up a consent form.
  • A member of the research team will talk to you about the details of the study. He or she will tell you exactly what will happen next.
  • Some studies involve saving samples from participants. These samples might include blood, saliva, or other body cells. The process of saving these samples for future research is called biobanking
  • Researchers may reach out to you for future studies

Note:

  • You can always ask questions if you do not know what to expect!

What will I get from taking part in a clinical trial?

“I went to different consultants and both agreed. Instead of stem cell I should try the clinical trial.”

Some people will not qualify to take part in a research study, and that has no reflection on the person itself. If you do qualify, there are many benefits for you, your community, and everyone’s health.

Choosing to take part in a study comes with many possible benefits:

  • You may have access to a new treatment not available outside of the trial.
  • You may be among the first patients to benefit from a new treatment.
  • You will receive close monitoring and care from the research team.
  • You may feel more control over your condition as you take an active role in treating your illness.
  • The trial may help doctors learn how to better treat your illness which can help many patients.
  • All of your personal information will be kept completely confidential.

Note:

  • Participating in a clinical trial is not for everyone. Be sure to discuss all treatment options with your doctor before deciding what is best for you.

Find more resources

Patient Rights

Click on a link below to read what the government and researchers do to protect participants:

Realities of Participating in a Clinical Trial

Click on a link below to learn more about how you may benefit as a healthy participant:

 At Chicago Public Library

Click on a link below to see resources at Chicago Public Library:

Find a clinical trial

Find a trial at Northwestern University here

Call a clinical trials recruitment nurse at Northwestern: (312)-695-1102

Find trials throughout Chicago and the US here

From the Chicago Department of Public Health

Connect to services and programs around Chicago

Chicago Health Atlas – for data to better understand health in Chicago and identify opportunities to improve health and well-being

CDPH’s Healthy Chicago 2.0 initiative

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Print out this guide to help you make a decision about taking part in a clinical trial.