Are Clinical Trials Right for Me?

Not sure if a clinical trial is right for you? This page will help you think through the risks, benefits, and what to expect before deciding.

Is a clinical trial right for me?

You should join a clinical trial if you want to help researchers find new treatments for patients. You need to be okay with the chance that you might get a placebo instead of the real treatment. You will also have to take many tests, answer questions, and spend a lot of time in the study.

Hear from other people with FSHD on why they take part in research and trials:

How do I choose which clinical trial to take part in?

There are many things to think about when choosing a clinical trial. You should think about the risks and benefits, and if you can fully take part in the study. For example:

  • Can you go to all the study visits? Most trials have several visits over weeks, months, or even years. Some visits can last a whole day. You may need to take time off work.
  • Will you need to travel? You might have to travel for some or all the visits if there’s no study site near you. If someone needs to come with you, can they take time off work? Ask if the study will pay for travel costs for you and your helper.
  • How much risk are you okay with? Medicines in Phase 1 or Phase 1/2 trials may not have been tested in people before. These trials can be riskier. The study team will check on you often, which may mean more visits or keeping a diary about how you feel.
  • Are you okay with taking a placebo? In Phase 2 and 3 trials, some people may get a placebo instead of the real medicine. A placebo looks like the real medicine but doesn’t have any active ingredients. You won’t know which one you’re getting until the study ends.
  • Is there an open-label extension? Some Phase 2 and 3 trials let you keep taking the real medicine after the main part of the study ends. If you were on a placebo, this gives you the chance to try the real medicine.

Learn more about all the questions you should ask during the screening process and informed consent.

Risks of joining a clinical trial

Joining a clinical trial has some risks. It’s important to think about how much risk you are okay with. Some common risks include:

  • You are taking an experimental treatment, which could have side effects.
  • You might have an allergic reaction to the treatment.
  • Some tests used in trials, like blood draws, MRI, or muscle biopsies, come with risks.
  • Taking lots of tests can make you feel tired.
  • Answering many questions can be mentally and emotionally exhausting.

 

Benefits of joining a clinical trial

Joining a clinical trial may have benefits. These may include:

  • You may feel good knowing you are helping the community and future patients.
  • You will get medical care and attention from experts who understand FSHD.
  • You might get early access to new treatments.