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FINN, living with Duchenne.

Clinical Trials: What to Expect

If you or your family member is selected for a clinical trial, you will need to provide informed consent to participate. This means that you will read through some information about the trial, ask your healthcare professional questions if needed, and sign a consent form.

Informed consent explains the following:

  • How the study will be conducted
  • Risks and benefits of participation
  • Cost to you, if any
  • Names and phone numbers of key contacts
  • Specific participant requirements
  • Study duration
  • Payment to you, if any

 

Some things to think about or ask your doctor about when considering a clinical trial:

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Logistics

  • Duration of the trial: Some trials are short, while others can last for years
  • Travel: You may need to travel or stay in hospitals for tests and/or treatments

Procedures

  • How many, how often, and what type of samples will be taken
  • How often the treatment team (doctors, nurses, social workers, and other healthcare providers) will monitor or administer tests
  • Which types of data will be collected and how they will be stored
  • Whether the treatment team will request that other tasks be completed, such as keeping a health log or tracking how the trial participant feels

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Treatment 

  • Possibility of getting placebo instead of the experimental treatment, and you may not know which you are receiving
  • Possibility of treatment not working
  • Possible side effects

The Parent Project Muscular Dystrophy (PPMD) website includes a detailed discussion of clinical trials and related resources.

VISIT THE PPMD WEBSITE