What You Should Know

Before you join a clinical trial, researchers must explain what the trial involves for you.

They must tell you:

  • why the study is being done
  • what treatment you will be asked to have
  • what are the possible risks and side effects?
  • what are the benefits?
  • what follow ups/check-ups will there be?
  • how often will there be follow up appointments and for how many years?


The research team will give you a patient information leaflet with the full information about the trial.

You will be able to take the leaflet home and read it in your own time.

You can use the leaflet when you are deciding whether to take part in the trial. And you can discuss it with your family, GP and neuromuscular doctor.


Before you or your child enters the trial, you must sign a statement saying you have been told, and understand, what taking part in the trial means for you/your child. This is called informed consent.

You can ask any questions you want if you don’t understand something at any stage - even after you have joined the trial. Informed consent is ongoing throughout the trial.


You can withdraw from a trial at any time, without giving a reason.

It is important to discuss this with the research team or your neuromuscular doctor so they can give you advice about how to do this safely. 

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