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FINN, living with Duchenne.

Clinical Trials: What to Expect

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.

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